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Spring 2017 edition<br />
<strong>Issue</strong> No: <strong>35</strong><br />
Weight<br />
issues and<br />
nutritional<br />
advice<br />
Emergency<br />
injection<br />
needles and<br />
accessories<br />
New: your<br />
feedback section<br />
Our national survey<br />
feedback<br />
Patients stories<br />
– a baby, a teen<br />
and an adult<br />
Socialising with<br />
an invisible illness<br />
Pituitary life | autumn 2012<br />
www.pituitary.org.uk
2<br />
news News<br />
Membership notice<br />
Contents<br />
As you may know, Membership<br />
fees have remained constant<br />
here at The Foundation for a<br />
number of years. We did make some<br />
changes to our rates in 2012, and spent a<br />
number of years consequently moving<br />
some of you over to an increased rate.<br />
This was predominantly for those<br />
paying the concessionary rate and<br />
was due to the fact it was not covering<br />
costs at that time.<br />
Costs to our charity increase each year<br />
and we have to ensure that our membership<br />
scheme is comfortably covering these<br />
increases. As part of our 2016 survey, we<br />
consulted with our valued members around<br />
our current membership scheme.<br />
95% of our members consider the<br />
current rate to be good value for money.<br />
87% would be happy to see occasional<br />
changes made to rates.<br />
We wanted to notify you as soon<br />
as possible that this year we will be<br />
increasing our rates. More information<br />
will follow with details of what the new<br />
rates will be and how current members<br />
can amend their payments. Don’t worry,<br />
you don’t need to do anything for now.<br />
We will keep you updated as soon as the<br />
changes are made.<br />
In return, there will be some additional<br />
benefits for our members. We have<br />
looked at all the statistics, comments and<br />
suggestions relating to membership from<br />
our survey and all this will continue to<br />
feed into our work to provide the best<br />
scheme possible for our members.<br />
Thank you for your support and<br />
understanding.<br />
Please contact emily.mullen@pituitary.<br />
org.uk if you have any questions ■<br />
News 2-8<br />
Local support group news 9<br />
Professional articles 10-13<br />
Patients’ stories 14-17<br />
Raising awareness 18-23<br />
Wall of thanks 19<br />
2016 Christmas Raffle<br />
We are delighted to announce that our Christmas<br />
raffle raised £5,770 so a huge thank you to everyone<br />
who took part. If you missed out this time you will<br />
still have a chance to win some great prizes as tickets for the<br />
summer raffle will be on sale from the end of March. The<br />
winners of the 2016 Christmas Raffle are as follows:<br />
Christmas raffle 1<br />
1st prize (£300) – Pauline Rossiter<br />
2nd prize (£200) – Sheila Pollard<br />
3rd prize (£50) – John MacNamara<br />
Christmas raffle 2<br />
1st prize (£300) – Pamela Holmes<br />
2nd prize (£200) – Stuart Squibb<br />
3rd prize (£50 – donated back to us!)<br />
– Catherine Poulton ■<br />
General<br />
Meeting<br />
Notice<br />
The Pituitary Foundation’s 2017<br />
General Meeting of Members<br />
will be held on Friday, 28<br />
April 2017 starting at 10am in the<br />
Doubletree by Hilton Hotel, Redcliffe<br />
Way, Bristol, BS1 6NJ.<br />
The Meeting Agenda and 2015/16<br />
Annual Report and Accounts will be<br />
available soon on our website. If you<br />
would like to attend the meeting, please<br />
contact Sian Pitman, Events and Patient<br />
Services Administrator on sian@<br />
pituitary.org.uk or 0117 370 1310 by<br />
Tuesday, 11th April 2017 ■<br />
Pituitary life | spring 2017
news News<br />
3<br />
Masters research: Understanding the<br />
needs of children with pituitary conditions –<br />
looking for participants<br />
Jade Walsh Masters student,<br />
Plymouth University<br />
Some of you reading this may<br />
remember a previous article<br />
describing a PHD project<br />
aiming to research children’s<br />
experiences of pituitary conditions.<br />
We are now restarting this research as<br />
a series of Master’s degree projects.<br />
In this first one we are interested in<br />
hearing about what it’s like to have a<br />
pituitary condition as a young person,<br />
issues about decision-making in relation<br />
to medical care, and the transition from<br />
paediatric to adult care.<br />
We are looking for some willing<br />
volunteers aged 10-21 who would be<br />
interested in participating in this research.<br />
The study will involve an interview<br />
approximately 1 hour long that will be<br />
conducted in a private, safe chat room<br />
online with Jade. These interviews will<br />
take place during the month of February.<br />
If you decide to take part in the study we<br />
will offer you a £10 Amazon voucher for<br />
your time.<br />
We hope that by conducting this<br />
research we will gain an insight into the<br />
difficulties that can occur when living<br />
with a pituitary condition, help health<br />
professionals to better understand their<br />
patient’s needs and ultimately assist with<br />
guiding intervention development.<br />
The research has been approved by the<br />
University of Plymouth and is supported<br />
by the Pituitary Foundation.<br />
If you or your child would be interested<br />
in taking part please feel free to contact<br />
me for more information at jade.walsh@<br />
students.plymouth.ac.uk ■<br />
Anon wrote in<br />
response to the ‘triple<br />
article’ feature in the last<br />
issue: A number of quotes stood out for<br />
me: “However you are the one who is responsible<br />
for getting to grips with your condition” (the<br />
patient); “Hormone replacement therapy …<br />
may require some finessing” (the psychologist);<br />
“You should check your doses and your (test)<br />
results” (the endocrinologist). These raise<br />
a lot of issues.<br />
The patient’s statement is one I agree<br />
with, in fact I tend to say that I’m managing<br />
my treatment. But it’s very difficult.<br />
Finessing my hormone therapy is<br />
something I would dearly like to do<br />
but the problem is working out what<br />
medication has which effects. As we all<br />
know, pituitary conditions are many and<br />
We welcome your comments from previous magazine articles. If you<br />
do wish to share these, please email them to pat@pituitary.org.uk<br />
varied and affect us all in completely<br />
individual ways. Nothing speaks to the<br />
need for ‘personalised medicine’ as much<br />
these conditions do. The problem is that<br />
our hormone systems are so complex and<br />
interconnected that you have to be an<br />
expert in complicated puzzles or a chess<br />
grand master to hold it in your head.<br />
Endocrinologists understand the broad<br />
structure but that’s just the generalised<br />
model and very few of us will fit that<br />
exactly. So being able to ‘finesse’ our<br />
medication, to fit the way our bodies and<br />
minds respond to it, is a great idea but<br />
hard to do on your own.<br />
A while ago I read an article by<br />
someone describing how she now split<br />
her hydrocortisone tablets into smaller<br />
fractions than the doctors suggest, in<br />
order to fit better into her body’s daily<br />
rhythms. That must take some time to<br />
work out by experimenting and keeping<br />
a record of the results. Again, I suspect<br />
few of us have the focus and patience<br />
to do that. If we’re taking three or more<br />
medications in a day/week/month, it’s<br />
even more complicated.<br />
The same goes for checking doses<br />
and test results. The endocrinologists try<br />
to get our levels within their guideline<br />
levels but have no idea what our personal<br />
ideal levels should be. It doesn’t help the<br />
individual patient if, as in my case, the<br />
results the hospital uses different units to<br />
those I can find on the Internet. I don’t<br />
have a ready reckoner to figure out where<br />
my results fit in the picture, in order to<br />
know how to vary my doses effectively.<br />
The ideal solution would be for us to<br />
have hormone pumps, as insulin-dependent<br />
diabetics can get, which would deliver the<br />
correct dose on demand as our bodies need<br />
them. These may come but are some way<br />
off in the future. It would require a long<br />
study of many different pituitary conditions<br />
- not only of the hormone levels, but also<br />
of how the patient experienced them in<br />
terms of fatigue, mood swings and sense of<br />
wellbeing. Let’s hope someone is working<br />
on the idea ■<br />
Pituitary Life | spring 2017
4 News<br />
Brighstone Tree festival<br />
“I have just been viewing your<br />
wonderful new website. I spoke with<br />
you many years ago when I did not<br />
know which way to turn with my<br />
daughter Rachel but who would have<br />
thought all these years later she would be<br />
featuring on your web page.”<br />
“Just a note to thank you for the<br />
current copy of Pituitary Life. I think<br />
the current copy layout and text<br />
presentation is excellent, and I wish to<br />
congratulate the production team and<br />
particularly the editor.”<br />
We’d like to say a massive<br />
thank you to our Volunteer<br />
Campaigner, and member<br />
of The Solent Support Group, Chloe<br />
Camoccio. Chloe designed and<br />
created this wonderful Christmas tree<br />
as part of the Brighstone Tree Festival,<br />
which ran during 8 -12 December. The<br />
tree is decorated with our Foundation<br />
colours and hand-cut quotes that<br />
Chloe has collected from patients.<br />
Well done Chloe!<br />
Here are just a few of the quotes that<br />
patients sent to Chloe for her tree:<br />
“I really like the new website<br />
and quality of the writing.<br />
To me there seems to be much<br />
more detail.” Phil, patient.<br />
“The Pituitary Foundation gave me<br />
all the information my consultant<br />
forgot to give me in a really easy to<br />
understand format; and answers all my<br />
questions however strange; and makes me<br />
understand I’m not alone.” Patient.<br />
“Made me realise I am<br />
NOT alone.”<br />
Pituitary life | spring 2017
News<br />
5<br />
Initial findings from The Pituitary<br />
Foundation 2016 Survey<br />
More than 1,000 people took<br />
part in our survey last year.<br />
The following information<br />
is based on the findings from the 500<br />
people who completed the survey<br />
online. A full report will be made<br />
available at a later date as analysis<br />
is currently underway by research<br />
students at Plymouth University who<br />
are volunteers.<br />
The results give a clear indication of<br />
the impact of pituitary conditions and<br />
the array of symptoms that are associated<br />
with each condition. The findings show<br />
the impact on health, employment,<br />
personal relationships, wellbeing and dayto-day<br />
life.<br />
‘People do not understand the<br />
implications of pituitary problems,<br />
it is the old tale - you never know<br />
what your hormones do until they<br />
stop working. Hard to explain such<br />
things and make people realise that<br />
you are on treatment for life and<br />
these things don’t get better.’<br />
From the results it is clear to see how we<br />
can strive to improve our current services<br />
and how we can continue to campaign<br />
for change to see people affected by a<br />
pituitary condition better able to access<br />
the healthcare they deserve. There is<br />
still a huge lack of understanding and<br />
knowledge around pituitary conditions<br />
and the impact on those with one of the<br />
many rare conditions.<br />
General<br />
The majority of respondents were from<br />
the UK but some were from further afield.<br />
Two thirds of those that took part (67%)<br />
were female. 14% of respondents were<br />
under <strong>35</strong>. Nearly half (48%) told us they<br />
were between 36 and 55, and 38% over 56.<br />
94% told us they have or have had<br />
a pituitary condition. 4% told us that a<br />
relative or friend has a condition and 2%<br />
told us they may have a pituitary condition.<br />
Health (conditions and<br />
symptoms)<br />
45% of people told us that they had<br />
hypopituitarism. 19% diabetes insipidus,<br />
19% a non-functioning tumour, 15%<br />
prolactinoma, 13% acromegaly, 11%<br />
Cushing’s, 6.5% craniopharyngioma,<br />
6% hypogonadism and 1.8% Sheehan’s<br />
syndrome. Respondents were able to<br />
select more than one option.<br />
‘It’s difficult to describe the mood<br />
swings, visual changes, impact on<br />
my appearance and the generalised<br />
pain.’<br />
‘The symptoms were invisible,<br />
people would say “pull yourself<br />
together” or “you are lazy”. This was<br />
due to no motivation and extreme<br />
fatigue, also depression which was<br />
difficult to discuss with anyone.’<br />
The following chart shows the percentage of people experiencing each symptom:<br />
Fatigue 87%<br />
Weight gain 60%<br />
Difficulty concentrating 55%<br />
Anxiety or depression 53%<br />
Low libido 50%<br />
Mood swings 49%<br />
Headaches 46%<br />
Generally unwell 41%<br />
Changes in appearance 40%<br />
Difficulty recovering from minor illnesses <strong>35</strong>%<br />
Dizzy spells 33%<br />
Pain 31%<br />
Changes in behaviour 30%<br />
Pituitary life | spring 2017
6<br />
News<br />
‘If you say you get really tired<br />
no-one really understands. It’s not<br />
a normal tiredness it’s one that’s<br />
impossible to fight against.’<br />
Many of the respondents have other<br />
medical conditions as well as their<br />
pituitary condition, such as diabetes<br />
mellitus, arthritis, infertility, fibromyalgia<br />
and depression. 38% report that they<br />
have developed other illnesses as a result<br />
of their pituitary condition.<br />
Healthcare professionals<br />
We asked people to rate the service received by health care professionals:<br />
Very good / good average Poor / very poor<br />
GP 57% 21% 22%<br />
Practice nurse 63% 24% 13%<br />
Endocrinologist 73% 17% 10%<br />
Neurosurgeon 89% 5% 5%<br />
Radiologist 86% 10% 4%<br />
Endocrine nurse 86% 10% 5%<br />
‘Nobody is interested in a nonevisible<br />
illness so I never get to<br />
explain anything. I am considered<br />
lazy, an over eater and moody.’<br />
Diagnosis<br />
6% of people told us they were<br />
diagnosed less than six months ago. 14%<br />
were diagnosed between six months and<br />
two years ago. 16% between two and<br />
five years ago and 63% over five years<br />
ago. On average, people waited between<br />
four and five years for a diagnosis to be<br />
reached.<br />
57% of people were diagnosed after<br />
one to six visits to their GP. 20% were<br />
diagnosed after between seven and 15<br />
visits and for 22%, it took over 16 visits.<br />
Treatment<br />
When asked about the stage of their<br />
treatment, 2.9% said they had just<br />
been diagnosed but not yet received<br />
any treatment. 11% were undergoing<br />
treatment. 64% had completed treatment<br />
and were on long-term medication. 5%<br />
had completed treatment and no longer<br />
required any medication.<br />
For those that had surgery, 77% had<br />
transsphenoidal surgery and 17% had a<br />
craniotomy.<br />
33% of the 65% who completed the<br />
question around treatment type received<br />
radiotherapy.<br />
7.7% of people see their GP or<br />
endocrinologist once a month. 17.6%<br />
four times a year, 40% twice a year, 29%<br />
once a year and 6% less frequently.<br />
‘People make assumptions based<br />
on appearance and do not believe<br />
you are ill. Fatigue is debilitating<br />
but is invisible. No-one has heard<br />
of Cushing’s disease. People try to<br />
normalise and generalise e.g. saying<br />
“that happens to me” when you try<br />
to explain cognitive problems. There<br />
is very little good literature. Even<br />
GPs do not understand it and do<br />
not have the time to research.’<br />
Only 38% of GPs or endocrine nurses<br />
referred respondents onto The Pituitary<br />
Foundation or provided them with one<br />
of our booklets. 62% did not.<br />
We asked people their opinion on the<br />
information they received:<br />
l 66% said they were not told enough<br />
about their condition when first<br />
diagnosed<br />
l 54% reported that they were not told<br />
enough about their condition before<br />
treatment<br />
l 53% reported they were not told<br />
enough about their condition after<br />
their treatment<br />
l 64% told us they did not have enough<br />
written information about their<br />
condition<br />
l 65% told us they find it frustrating that<br />
their questions cannot be answered by<br />
their endocrinologist/GP<br />
l 51% told us they needed someone to<br />
help them understand the information<br />
they found on the internet<br />
l 84% told us they used information from<br />
The Pituitary Foundation the help them<br />
ask questions of their healthcare team<br />
‘It is difficult because it is not<br />
a condition that can be seen.<br />
Consultants even think that because<br />
they have cured the Cushing’s I<br />
am fine, but they don’t look at me<br />
holistically and at the psychological<br />
effects.’<br />
We asked participants what they<br />
thought would make a real difference<br />
to their health care:<br />
l 87% told us a better informed GP<br />
l 83% told us more information around<br />
different treatment options<br />
l 92% told us early signposting to The<br />
Pituitary Foundation<br />
l A staggering 94% think that more<br />
information on the impact of pituitary<br />
on mental health and what support is<br />
currently available.<br />
‘Most people think that after the<br />
tumour is removed you are well.<br />
People look at me and say how well<br />
I look, and don’t seem to be able to<br />
grasp that at the moment I can’t lead<br />
a normal life. I feel I am judged.”<br />
Support<br />
33% told us that they receive help from<br />
a carer.<br />
34% have a support group within a 30<br />
minute drive and 47% within a 1 hour<br />
drive. Of those that attend they find it<br />
helpful for information (81%), meeting<br />
like-minded people (75%), learning<br />
about different treatment options (67%),<br />
emotional support (61%), and selfmanagement<br />
(61%).<br />
Pituitary Life | spring 2017
News<br />
7<br />
The impact of having a pituitary condition<br />
We asked our supporters - how do you feel about:<br />
Very satisfied /<br />
satisfied<br />
Not satisfied /<br />
most dissatisfied<br />
Your ability to get around? 71% 29%<br />
The quality of your sleep? 43% 57%<br />
Yourself generally? 38% 61%<br />
Your sex life? 32% 68%<br />
Your personal relationships? 63% 37%<br />
Emotional support from friends /<br />
68% 32%<br />
relatives?<br />
Emotional support from healthcare<br />
professionals?<br />
44% 56%<br />
Support from The Pituitary Foundation? 91% 9%<br />
‘A lot of people think that<br />
hormones are all about puberty,<br />
having babies and periods. They<br />
don’t realise that hormone problems<br />
can be life threatening.’<br />
We asked about the impact a pituitary<br />
condition can have:<br />
l 55% told us their pituitary condition<br />
has resulted in stopped or reduced paid<br />
work<br />
‘Extreme fatigue and general<br />
reduction in ability to concentrate<br />
has made me lose confidence at work<br />
and has limited my opportunities as<br />
it is a ‘hidden’ disability.’<br />
l 28% said their illness had resulted in<br />
stopped or reduced education<br />
l 62% told us they experienced reduced<br />
social contact<br />
‘The fatigue and associated<br />
symptoms have been debilitating.<br />
I can no longer work and I have<br />
lost the vast majority of my friends<br />
because I can’t go out socialising.’<br />
l 58% told us their pituitary condition<br />
had resulted in reduced fertility or<br />
infertility<br />
l 75% said they had experienced changes<br />
to their appearance<br />
l 75% told us they had experienced anxiety<br />
or depression as a result of their illness<br />
l 60% said they experience pain or<br />
discomfort as a result of their illness<br />
l 74% told us they have extreme fatigue<br />
that limits their activities<br />
l 77% told us they have an increase in<br />
susceptibilities to fluctuations of mood<br />
The Pituitary Foundation helps people<br />
access the correct information about<br />
their illness, it aims to give them a sense<br />
of belonging, it helps them to meet likeminded<br />
people, to access the correct<br />
healthcare professionals, to learn about<br />
different treatment options, and to selfmanage<br />
their symptoms.<br />
The wealth of information, opinions<br />
and experiences we have recorded<br />
will help The Pituitary Foundation to<br />
continue supporting patients in the best<br />
way possible. It will also help inform<br />
our campaigns work and help us raise<br />
awareness in order for pituitary patients<br />
to receive the best care possible.<br />
A very big thank you to everyone<br />
who took the time to participate in this<br />
survey ■<br />
Pituitary National<br />
Conference 2017<br />
We are starting to plan for the next National<br />
Pituitary Conference which we are hoping to<br />
hold on a Saturday during November this year<br />
(depending on venue availability). The location and<br />
exact date will be announced in March or April so do<br />
keep an eye on the website.<br />
All booking information will also be included in the<br />
next Pituitary Life (summer edition in June). The event is<br />
always very popular so<br />
we recommend booking<br />
early. We will have a whole<br />
host of medical experts<br />
running workshops covering topics<br />
of interest to patients and their families. Our Conference<br />
is also an excellent opportunity to meet others and share<br />
experiences ■<br />
Pituitary Life | spring 2017
Pituitary eye test A5_v2.indd 1 19/08/2016 08:48<br />
8<br />
news News<br />
Campaigns and policy work update<br />
The Foundation takes part in regular policy work, and we campaign on key<br />
issues facing pituitary patients to improve care and services.<br />
• Summary of our October Awareness Month<br />
2016 optician awareness campaign<br />
Awareness Month ensured more<br />
opticians are now aware of pituitary<br />
tumours than previously, which<br />
will help to prompt earlier diagnosis for<br />
some pituitary patients. Participants<br />
raised a great deal of of awareness to local<br />
opticians through distributing our leaflets,<br />
and The Foundation contacted optometry<br />
organisations, optician headquarters, eye<br />
CAN<br />
hospitals and retinal screening centres.<br />
Participants were also involved in giving<br />
awareness talks, running awareness stands, and<br />
holding ‘Great Pituitary Bake-offs’. Overall, we<br />
had a great response to this campaign and we saw a<br />
24% increase in people involved compared with Awareness Month<br />
in 2015. When the campaign was launched there was a terrific<br />
response to our first post on Facebook which reached over 7,000<br />
people. A huge thank you to all our participants for their hard work!<br />
An exciting development occurred at the end of Awareness<br />
Month as we were contacted by one of our members, Derick<br />
Watson, whose son, Dominic, works as a consultant for Myers La<br />
Roche, a company that provides marketing support and practice<br />
sales for opticians and optometrists. They are the largest business<br />
of this type in the UK and have contact with all independent<br />
opticians. Dominic has very kindly offered to support us by<br />
sending out our optician awareness leaflet in their January circular,<br />
which will be sent out to 2750. The company will also help us<br />
raise awareness through their communications and social media<br />
channels. An enormous thank you to Myers La Roche from all<br />
of us here at The Pituitary Foundation - this will raise enormous<br />
amounts of awareness!<br />
New campaigns for 2017 -<br />
We are currently in the final stages of planning our three brand<br />
new campaigns for 2017. These will be announced very shortly<br />
and launched in March, June and October this year. We will be<br />
very keen to hear from anyone who would like to get involved.<br />
You can read all about what we have achieved in the past on<br />
DID<br />
60<br />
YOU<br />
45<br />
30<br />
KNOW<br />
26<br />
VISUAL<br />
21<br />
FIELD TESTS<br />
16<br />
DETECT<br />
12<br />
PITUITARY TUMOURS?<br />
our campaign archive webpage. Some useful resources from<br />
past campaigns are still available and still being used to spread<br />
awareness, e.g. raising awareness about adrenal<br />
crisis and diabetes insipidus.<br />
l The Society for Endocrinology and The<br />
Pituitary Foundation released a joint position<br />
statement to welcome the news that the NHS<br />
is continuing to routinely fund pegvisomant<br />
and pasireotide. In the lead up to this decision,<br />
and all the discussions surround PrEP (Pre-<br />
Exposure Prophylaxis), we took part in some<br />
co-ordinated campaign activity run by Terrence<br />
Higgin’s Trust. It was a display of unity among<br />
individuals, eight charities, and MPs. We used the<br />
#PatientsTogether for our coordinated social<br />
media activity, and an open letter was printed in<br />
The Times.<br />
l We have been continuing to speak out for pituitary patients<br />
in our role on the Clinical Reference Group in England,<br />
and as a member of the Welsh Cross Party Group for rare<br />
diseases, as well as through the other rare disease networks we<br />
are involved with.<br />
l We were asked to give a presentation at an Access to<br />
Medicines event (run by Rare Disease UK and Genetic<br />
Alliance) to talk about our experiences in taking part in NHS<br />
medication assessment processes. We were asked as it is rare for<br />
a patient organisation to have taken part in both the Welsh and<br />
Scottish assessment system and they were keen for our feedback.<br />
l We attended a focus group with Genetic Alliance and other<br />
patient organisations to contribute to the production of the<br />
Welsh patient charter for rare disease patients. We<br />
were able to put forward the common concerns and problems<br />
faced by those undergoing diagnosis and treatment.<br />
l We now know last years’ Adrenal Crisis e-Learning module<br />
campaign resulted in increased numbers of paramedics<br />
increasing their knowledge of adrenal crisis. As a result of<br />
the campaign, nine ambulance trust/training organisations<br />
are now utilising our training module within their training<br />
programmes. Paramedics across the UK contacted us to ask<br />
to take the module as part of their own personal development,<br />
and 72 helped us distribute flyers ■<br />
For any queries relating to campaigns and policy work please call 0117 370 1316 or email campaigns@pituitary.org.uk and Rosa,<br />
our Campaigns, Volunteers & Events Manager, will be happy to help. To find out more, see how you can get involved, or for details<br />
about becoming a Volunteer Campaigner you can also visit the campaigns section of our website. Just click on the ‘Get Involved’ tab ■<br />
Pituitary life | spring 2017
Local Support Group News<br />
9<br />
For information about our groups’<br />
meetings and to see if a group<br />
meets near you, please see our<br />
website, contact 0117 370 1320 or<br />
email helpline@pituitary.org.uk<br />
Younger People and Parents’<br />
Support Group<br />
Alice and Richard attended the 2016<br />
BSPED in November to run an<br />
awareness stand for The Foundation.<br />
BSPED is a medical conference about<br />
paediatric endocrinology. There was<br />
plenty of interest from healthcare<br />
professionals in our awareness stand,<br />
especially of our new publications for<br />
young people and in Richard’s patient<br />
story. A big thanks to Alice and Richard<br />
for attending. If any younger patients<br />
and parents want to get involved<br />
with this support group or to speak<br />
to someone about the challenges of<br />
education, health care, transition, and<br />
youth specific difficulties, just email<br />
aljackman@hotmail.co.uk or contact<br />
The Foundation who can pass on<br />
Alice’s number.<br />
Ipswich and Suffolk Support Group<br />
This group meets to share experiences<br />
and to welcome guest speakers. Recently<br />
they have been working closely with<br />
their local ambulance service to improve<br />
hydrocortisone awareness. The group also<br />
work hard to promote and participate in<br />
The Foundation’s campaigns. Rosa from<br />
The Foundation attended their latest<br />
meeting and gave a presentation about<br />
The Pituitary Foundation’s services and<br />
current activities. If you live nearby do<br />
come along and meet this friendly group,<br />
which is run by Specialist Endocrine<br />
Nurse, Kelly Pendle, and Chair, John Day.<br />
Meetings are held in Ipswich Hospital.<br />
Email pitips@btinternet.com or phone<br />
John Day on 01473 730946.<br />
Exeter, Plymouth, Torbay & Truro<br />
Support Group<br />
This group has grown to 97 members<br />
and rotates its meetings between four<br />
hospital endocrine centres, with each<br />
usually hosting two group meetings<br />
per annum. All meetings are open to<br />
anyone with pituitary problems and<br />
their partners and family. The meetings<br />
are held on weekdays, at 6pm which<br />
the group find is a good time to invite<br />
the doctors along to speak after work.<br />
Meetings last for a couple of hours.<br />
Recently, Sian and Rosa from The<br />
Foundation went to visit the group at<br />
their meeting in Exeter, Endocrinologist<br />
Dr Antonia Brooke also spoke. Mike<br />
Luxton is the group’s area co-ordinator.<br />
To join this group simply make contact<br />
with him at mike.pituitarylsg@gmail.<br />
com or phone 01872 501375.<br />
Oxford Support Group<br />
This group meets to support pituitary<br />
patients, and receives excellent support<br />
from all the staff at the Oxford Centre<br />
for Diabetes, Endocrinology and<br />
Metabolism, who often join them for<br />
meetings. The group last met in late<br />
November and Sammy from The<br />
Foundation attended to give a talk about<br />
fatigue management in relation to The<br />
Foundation’s new publication about<br />
fatigue. For more group information,<br />
email helpline@pituitary.org.uk or<br />
contact Mark, the co-ordinator, on<br />
012<strong>35</strong> 200056 ■<br />
In memorial<br />
It is with great sadness we<br />
heard that Judith Kershaw,<br />
former Area Coordinator for<br />
Doncaster Support Group,<br />
had passed away on 15<br />
October 2016.<br />
Judith said that her diabetes<br />
insipidus appeared when she was about<br />
10 years old. She was always given a pint<br />
bottle of water to take to bed. Her thirst<br />
was ever growing but everybody just put<br />
it down to being hot and that you<br />
didn’t go to doctors in those<br />
days unless you couldn’t walk.<br />
Her great commitment<br />
and support to other<br />
pituitary patients in<br />
Doncaster won’t be forgotten,<br />
nor her wicked sense of humour.<br />
We offer our sincerest sympathy to her<br />
beloved husband, Bob, and her family ■<br />
Pituitary life | spring 2017
10 Professional articles<br />
New Year, New You - Made Simple<br />
Claire Johnson S.N.H.S. Dip. (Nutrition) S.N.H.S. Dip. (Advanced Nutrition)<br />
So here we are again, that time<br />
of the year to reflect on what we<br />
have achieved and what we didn’t<br />
achieve! Then there is the setting of<br />
New Year’s resolutions – what we want<br />
to change, achieve, stop, do.......the list<br />
goes on! We end up overwhelmed by<br />
what we should be doing and what’s<br />
right. Instead, we should be thinking<br />
about what we want to do.<br />
January is a great month to start afresh<br />
but we must think about the year ahead.<br />
It’s good to have ideas and set goals but<br />
we need to maintain these throughout<br />
the year and if you’re like me, that’s the<br />
hardest part! January can be a very dull<br />
month with dark mornings and nights<br />
and not much sunlight which can make us<br />
feel low. So, it’s no wonder by the end of<br />
January, we may have only achieved one<br />
of our intentions, if any, and then start<br />
thinking is it worth it or this is too hard<br />
and I can’t be bothered!<br />
So, in the last few years I have<br />
discovered a ‘New Year, New<br />
Me’ plan!<br />
I start with reflection – what goals did<br />
I achieve throughout the year – not just<br />
January! Then I give myself a pat on the<br />
back for all the ‘Yes’s’ and then I move<br />
on to the ‘No’s’.......why didn’t I achieve<br />
those goals? Maybe they were too hard or<br />
my heart and head weren’t in it or maybe<br />
I didn’t plan enough! It’s important to<br />
understand ‘why’ otherwise it will happen<br />
all over again. Changing habits is what I<br />
think is important – it doesn’t have to be<br />
as cut and dry as giving up chocolate for<br />
the rest of your life or wanting to be a<br />
size 8! Gradual changes are the key; small<br />
changes to our habits eventually develop<br />
into life-long habits. Don’t try and achieve<br />
all your goals at once – you may have a<br />
long list like me! I simplify it and decide<br />
on one goal and apply the changes;<br />
once I feel these are underway, normally<br />
by the middle of February, I then add<br />
another change/goal and this is what I do<br />
throughout the year.<br />
Here are some ideas to help you<br />
achieve the new you in 2017<br />
Plan and prepare – This may seem<br />
boring, but it is so important with any new<br />
change in succeeding and in continuing<br />
to maintain it. For example, I always<br />
make sure I plan my food menus for the<br />
week ahead and prepare as many as I<br />
can at the beginning of the week, so I’m<br />
not tempted by other meals! Benjamin<br />
Franklin said “By failing to prepare, you<br />
are preparing to fail”.<br />
Simply, eat well – instead of giving<br />
up one of your favourite foods, why<br />
not eat less of it, smaller portions and<br />
generally eat well. When dining out, make<br />
sure you choose healthier options on the<br />
menu – you will feel good for it.<br />
Move more – You may well be into<br />
fitness, but if not, think about what<br />
exercise you can do. It might mean<br />
walking for 15 minutes once a day or<br />
walking further, taking the stairs, starting<br />
a yoga class. Any extra movement will<br />
help towards being healthier.<br />
Take up a new hobby – Maybe there<br />
is something you’ve always wanted to try;<br />
learning another language or taking up<br />
crafts.<br />
Be mindful – Take time to think in the<br />
moment. We are all too quick to grab a<br />
coffee whilst walking, not realising we’ve<br />
drunk it before we reach our destination.<br />
So taking time to sit, sip, smell and taste<br />
the coffee is important to still the mind and<br />
body, just relax and be in the here and now.<br />
Be kind to yourself – Put yourself<br />
first, take a bath, relax, go for a walk or<br />
have a massage. Stop comparing yourself<br />
to others, you are you! Be patient – this<br />
is sometimes so difficult, we want things<br />
to happen overnight but remember small<br />
changes will develop into life-long habits.<br />
Declutter – This is great for the mind<br />
and your space! Have a glorious sort out<br />
in each room; donate things you don’t use<br />
anymore, maybe change a room around.<br />
It’s amazing how revitalising this can be!<br />
Breathe - Take time to breathe, notice<br />
your posture, don’t slouch – sit up straight,<br />
close your eyes and inhale slowly through<br />
your nose and exhale slowly through your<br />
nose, make a sighing noise and get rid of<br />
the stale air in your lungs.<br />
Maintain – Overall the most important<br />
part of any change is monitoring and<br />
making sure you are maintaining that<br />
change. Take note of how you are feeling<br />
and what you are achieving. Writing a<br />
journal, just a few lines is a good way to<br />
keep on track and a great way to look<br />
back over the year and say ‘YES’ I did<br />
extremely well in changing my habits! So,<br />
2017 here I come!<br />
Soothe yourself into the New<br />
Year with our…<br />
Soothing Lentil Soup (serves 4)<br />
• 250g of cooked lentils – prepare<br />
according to the packet<br />
• 1 onion, chopped<br />
• 2 cloves of garlic, chopped<br />
• 2 large carrots, chopped<br />
• 1 large handful of spinach<br />
• 2 teaspoons of ground cumin<br />
• 250g of chopped, fresh tomatoes<br />
• 250ml of homemade vegetable stock<br />
• 1 tablespoon of raw coconut oil (or<br />
olive oil if you do not have coconut oil)<br />
Pituitary life | spring 2017
news Professional articles<br />
11<br />
Add the coconut oil, chopped onion and<br />
chopped garlic to a large pan and gently<br />
sauté for a few minutes, then add the<br />
chopped carrots and stir in the vegetable<br />
stock, bring to the boil and then simmer<br />
for five minutes.<br />
Add the lentils and cook for a further<br />
five minutes, then stir in the spinach,<br />
tomatoes, ground cumin. Transfer to a<br />
blender, blend until smooth then serve.<br />
Nutritional Facts:<br />
Lentils are a rich source of dietary fibre<br />
and iron. Cumin dates back to more<br />
than 5000 years, aids digestion and helps<br />
strengthen the immune system.<br />
The new version of our booklet<br />
‘Weight <strong>Issue</strong>s’ will be available at the end<br />
of February. It will include lots of ideas<br />
and tips to help you and Claire has kindly<br />
contributed to this booklet with her expert<br />
knowledge of good nutrition ■<br />
Socialising with an invisible illness<br />
Dr Sue Jackson<br />
It’s January as I’m writing this, and<br />
the major social season of the year<br />
for most of us (Christmas and<br />
New Year) is behind us. But January<br />
is typically the time of New Year<br />
resolutions, which got me to thinking<br />
– what kind of New Year’s resolutions<br />
would you need in order to be in a<br />
good place to socialise during 2017?<br />
Socialising with an invisible illness isn’t<br />
easy – you generally don’t look like there’s<br />
anything wrong with you even though<br />
there is; and fatigue is a big problem for<br />
lots of people with pituitary conditions.<br />
You simply don’t have the resources to do<br />
everything. If we start with the basics -<br />
lots of us need to work to pay the bills<br />
so that’s a significant chunk of time and<br />
energy gone; then you need to eat, so<br />
there’s the food shopping, cooking, eating<br />
and washing up; there’s the need to keep<br />
your living space in good order, so we<br />
need to spend time cleaning and doing<br />
household maintenance of various kinds.<br />
Plus, you need time for yourself – to keep<br />
yourself in good order – I’m thinking<br />
exercise, hobbies and some fun. That’s a<br />
lot of time and energy already used up<br />
before you get to the major social events<br />
of the year.<br />
Energy is like your finances<br />
If you think of energy as being like your<br />
finances - whatever your budget you need<br />
to spend and reinvest what you have<br />
wisely. When it comes to covering the<br />
basics there are some common mistakes<br />
we make that leave us feeling as though<br />
our energy just evaporates. For instance,<br />
lots of people do what I call the “headless<br />
chicken”, valiantly trying to do multiple<br />
things at once before collapsing in a heap<br />
and then doing the same thing again. If<br />
you want to climb the Alps, you have<br />
to do what’s known as the Alpine plod.<br />
You set a very slow speed, and you keep<br />
going all the time with short breaks now<br />
and then. The Alpine plod is a good way<br />
of managing everyday tasks, too. It keeps<br />
your energy stable and, oddly enough, you<br />
usually get more done than you usually<br />
would do and you finish the day feeling<br />
OK, i.e. not like a limp dishrag. The<br />
Alpine plod is best achieved if you make<br />
a list of everything you need to do, and<br />
check it regularly through the day – most<br />
people waste energy by over-using their<br />
memory and the mad bursts of activity<br />
are caused by suddenly remembering that<br />
there’s another thing that needs to be<br />
done today. So, learning to make useful<br />
lists, and sticking up reminders to work<br />
at what I call “pottering speed” (aka “less<br />
chicken”) might be good resolutions.<br />
Time to look after yourself<br />
What about the time and energy you need<br />
to spend on yourself? It can be tempting<br />
to give the bare minimum to our self-care,<br />
especially if we have a long-term condition<br />
that impacts our energy. A condition that<br />
affects how many hours you can work and<br />
what you can contribute to your family can<br />
leave you feeling that you are being selfish<br />
if you take time to look after yourself.<br />
Lots of people that I talk to say that they<br />
feel guilty about not being able to do the<br />
basics, and feel that they are letting their<br />
friends and family down, if they take time<br />
out for themselves. Because the condition<br />
is invisible, friends and family often don’t<br />
understand, and can add to the burden<br />
of guilt that you carry. It’s tempting to do<br />
what others want you to do, and accept<br />
that you’ll have no energy left afterwards.<br />
Lots of people with chronic conditions<br />
talk about “good” and “bad” days.<br />
“Good” days, when they are feeling well<br />
and can do things – usually in a headless<br />
chicken fashion – and “bad” days, when<br />
there is no energy for anything and they<br />
have to take to their bed or the sofa and<br />
recuperate from the physical symptoms<br />
of exhaustion associated with their<br />
condition.<br />
Boom & bust<br />
Spending the bare minimum on our<br />
self-care is not a good way to manage<br />
our energy. Boom and bust tends to<br />
leave people experiencing far more bad<br />
days than they need to. Recuperation is<br />
necessary if you’re ill from over-doing<br />
things, but there is an alternative strategy.<br />
In addition to going at pottering speed<br />
and using lists, making time for activities<br />
intended to promote restoration and<br />
relaxation is important. If pottering<br />
speed and to-do lists are about energy<br />
expenditure, restoration and relaxation are<br />
about recharging your batteries, or energy<br />
Pituitary Life | spring 2017
12 Professional articles<br />
reinvestment if you like. Neither of them<br />
involves doing nothing, only recuperation<br />
requires a minimum of activity; in order<br />
to keep your energy flowing well, you<br />
need to keep working on it.<br />
Relaxation is about promoting our<br />
ability to self-soothe appropriately. Like<br />
all animals, humans are programmed to<br />
self-soothe after experiencing something<br />
difficult. For example, if my cat gets<br />
stressed or is distressed by something,<br />
he will seek somewhere quiet to do some<br />
grooming. With his fur settled to his<br />
satisfaction and his equilibrium restored,<br />
he will come and rejoin the family<br />
group. Grooming is a repetitive action<br />
that soothes the cat’s brain and body,<br />
requiring only some minor effort on the<br />
cat’s part. Some humans have a problem<br />
with choosing appropriate forms of<br />
self-soothing – smoking, drinking, retail<br />
therapy, gambling, and doing drugs all<br />
affect the brain and body, but despite<br />
what we might tell ourselves, they don’t<br />
promote relaxation. What you need are<br />
some hobbies or activities that involve low<br />
energy expenditure and include repetitive<br />
action, for example, wood-working,<br />
knitting, crochet, scrap-booking, painting,<br />
sewing or reading (although the subject<br />
matter will play a part in the effectiveness<br />
of this – a tense thriller is not a relaxing<br />
read).<br />
Household tasks as a form of<br />
relaxation<br />
I suspect I may not be popular for<br />
mentioning it, but some household tasks<br />
can be used as a form of relaxation –<br />
for example, ironing can be therapeutic,<br />
as can brushing the kitchen floor, doing<br />
the washing up, dusting and polishing.<br />
What matters is the attitude you bring to<br />
the task. If you’re in a strop because the<br />
ironing is yet another thing that has to<br />
be done today, it won’t be a therapeutic<br />
experience, but if you’re doing the ironing<br />
at pottering speed, paying attention to<br />
the pleasure associated with getting the<br />
creases out and the rising scent of clean<br />
cotton it can be very relaxing.<br />
If relaxation is about self-soothing, then<br />
restoration is about self-investment and<br />
improving our health and our relationship<br />
with ourselves (our self-esteem, if you<br />
like). Like relaxation, restoration requires<br />
some energy expenditure on our part. It<br />
can be likened to positive growth and can<br />
encompass both our physical and mental<br />
health and wellbeing. Physical restoration<br />
is about movement – keeping everything in<br />
good order. To use another example from<br />
my cat – he regularly stretches himself out<br />
and he makes time to play with us. The<br />
simplest physical forms of restoration for<br />
humans are walking regularly and doing<br />
some simple stretching exercises (there are<br />
some really good tutorials on YouTube).<br />
Mental restoration involves developing<br />
our thinking, and at its simplest it could<br />
involve reading a book that you wouldn’t<br />
normally read, or talking with a friend,<br />
but it could also involve going to see an<br />
exhibition at a gallery or going to a movie.<br />
Things that you can do for short amounts<br />
of time, but that help you to grow and<br />
develop by challenging your perceptions<br />
of the world in various ways. Research<br />
on life-long learning shows that it doesn’t<br />
matter what you learn (whether through<br />
a formal programme or not) it improves<br />
confidence, promotes self-esteem and<br />
fosters resilience.<br />
To get the most out of the energy you<br />
have available, you may need to improve<br />
your forward planning so you can budget<br />
effectively. A timetable of activities that<br />
you follow blindly doesn’t really work if<br />
you have a chronic condition. We have a<br />
tendency to focus on each day at a time,<br />
but we do better if we think about our<br />
energy needs over a longer time period, in<br />
much the same way that elite athletes do.<br />
They need to peak at a particular point for<br />
a major competition, so all their activity<br />
is geared towards helping them do that,<br />
with less important competitions being<br />
used to help them to figure out how they<br />
are progressing. You need to have some<br />
sense of what and when this year your<br />
major energy expenditures are going to<br />
be – a family wedding? A family holiday?<br />
Moving house?). Once you know that you<br />
can start to think about how you need to<br />
build your energy reserves to make sure<br />
you can do the things that you want to do.<br />
I have a year planner that shows me the<br />
big events (in terms of time and energy)<br />
that I have this year, but I also have<br />
monthly planners that help me to get a<br />
sense of how much I have to “spend” in<br />
terms of energy, so I can work out where<br />
and how to build in the relaxation and<br />
restoration. I have a to-do list for each<br />
day to help keep me going at pottering<br />
speed. It sounds complicated, but if you<br />
can work out how to keep your energy<br />
flowing smoothly you will have fewer<br />
bad days, which leads to improved selfesteem<br />
as well as potentially improved<br />
relationships with family and friends.<br />
Improve how you listen<br />
You may also need to improve how you<br />
both listen and talk to yourself. Learning<br />
to listen to yourself properly so that you<br />
know how you’re feeling day on day is<br />
useful. I keep a diary so I can monitor<br />
how my energy responds to the various<br />
demands of my life. Over time it has<br />
provided useful information and helped<br />
me to identify the unhelpful habits that I<br />
can easily fall into which drain away energy<br />
unnecessarily. Making sure that your<br />
eating habits are helping you maintain<br />
good energy, not starving or dehydrating<br />
yourself is also important. In terms of<br />
talking to ourselves, if all you do during<br />
the day is to keep reminding yourself how<br />
tired you are, you’re going to make it more<br />
difficult to manage your daytime energy.<br />
That’s not to ignore how you’re feeling,<br />
but it’s better to acknowledge that “my<br />
energy is feeling low – I need to get up<br />
and move” than it is to say “I feel tired”<br />
and to remain slumped at your desk. And<br />
slumping tends to constrict our breath<br />
which causes us to feel tense and anxious<br />
and that drains away energy, too. So just<br />
learning to sit up straight and regulate<br />
your breathing can make a difference in<br />
daytime energy levels.<br />
Manage your energy<br />
Like many things, learning how to manage<br />
your energy takes time and effort, but the<br />
rewards are so worth it, particularly if you<br />
want to have enough left in your account<br />
to party like it’s 2017! If you’d like more<br />
information, The Pituitary Foundation<br />
has a booklet called “Fatigue Management”<br />
as part of its Wellbeing Series ■<br />
Pituitary life | spring 2017
Professional articles<br />
13<br />
Needles for hydrocortisone injections<br />
Alison Milne, Endocrine Specialist Nurse<br />
When patients are prescribed<br />
their vials or ampoules of<br />
100mg hydrocortisone for<br />
injection in emergency situations,<br />
they may not be offered the supplies<br />
necessary to inject with. Below is a<br />
guide to help when asking for these<br />
supplies.<br />
Sizes and colours of needles<br />
l 21g x 1.5inches 0.8mm x 40mm<br />
(green) for drawing up the solution.<br />
l 23g x 1inches 0.6mm x 25mm (blue)<br />
for administering the injection<br />
These are needed for:<br />
1. Hydrocortisone Sodium Phosphate<br />
100mg/ml - 5 ampoule pack by<br />
Amco (ex efcortesol). Advise you<br />
have minimum of two ampoules of<br />
medication at least.<br />
2. Solu-Cortef (Pfizer) – powder to<br />
mix with water for injections 1ml<br />
(please ensure the water for injecting is<br />
prescribed too). Advise you have two<br />
vials of medication and dilutant at least.<br />
Ensure you have enough needles for each<br />
injection plus a spare.<br />
Where can you get your<br />
needles and accessories from?<br />
You can obtain needles from your GP,<br />
endocrine clinic nurse or local pharmacy<br />
who dispenses the medication. NB: these<br />
may need to be on prescription. There is<br />
a ‘needle exchange programme’ in the UK<br />
which your pharmacist might be part of.<br />
This is for the injecting of medication as<br />
well as recreational drugs.<br />
Sharps disposal boxes and clippers<br />
are available on prescription (FP10<br />
prescription form) in all four nations<br />
of the UK. Different schemes and<br />
arrangements are in place for the safe<br />
disposal of your sharps disposal box.<br />
Schemes vary from nation to nation<br />
and even down to the locality, and<br />
your local healthcare provider should<br />
have information about local disposal<br />
methods. (NHS) See www.nhs.uk/chq/<br />
pages/2421.aspx<br />
ADSHG do supply needles to purchase<br />
and you can contact them through their<br />
website.<br />
www.addisons.org.uk/forum/index.<br />
php?/store/product/7-adshg-adultemergency-injection-kit-small-caseitem-401/<br />
Disclaimer: The Pituitary Foundation is<br />
not responsible for third party products<br />
General tips for injecting<br />
l Check the expiry date<br />
l Wash your hands before preparing<br />
injection<br />
l Always use a new, sterile needle and<br />
where possible use a separate needle<br />
to draw up solution prior to changing<br />
needle for administration<br />
l Check for air bubbles<br />
l Choose the injection site<br />
l Take your time<br />
l Remember, if in doubt give it!<br />
l How to inject video on our website<br />
www.pituitary.org.uk/information/<br />
treating-a-pituitary-condition/<br />
hydrocortisone/<br />
NB: Injection swabs are no longer<br />
required.<br />
Emergency injection administration<br />
keeps you safe until you receive medical<br />
attention. It is not intended to replace you<br />
seeking medical help ■<br />
Pituitary Life | spring 2017
14 Patients’ stories<br />
Richard’s story<br />
My pituitary tumour was<br />
diagnosed almost exactly five<br />
years ago. The symptoms<br />
had come on suddenly nine months<br />
previously, when on returning to work<br />
after a six week break suffering from<br />
extremely painful sciatica, I realised<br />
I couldn’t manage a full day. The<br />
fatigue came out of the blue but was<br />
overwhelming. My first suspicion<br />
was a liver complaint because I’d had<br />
hepatitis many years before and that<br />
had left me with the same lack of<br />
energy. Tests showed this was not the<br />
case. In fact, all the tests I had over<br />
the following months - including an<br />
assessment for ME - proved negative.<br />
In theory I was really healthy.<br />
My employers allowed me to work half<br />
my normal hours while this went on. The<br />
next symptom to appear was my inability<br />
to eat protein-rich food, like meat. I don’t<br />
recall being actually sick if I did, my body<br />
just seemed to know I couldn’t deal with<br />
it. This also reminded me of the hepatitis.<br />
My energy levels went down and down,<br />
as did my appetite. By the late summer<br />
I was surviving mainly on Complan and<br />
porridge. Walking any distance was a real<br />
struggle. Then I began to think my reading<br />
glasses must be very grimy because I was<br />
having difficulty reading things. One day<br />
I polished them once again and closed my<br />
left eye to look and saw that the centre of<br />
my vision was greyed out. I’d got AMD<br />
(age-related macular degeneration)! I<br />
went to the opticians where I was told I<br />
had an inflamed optic nerve and ought to<br />
go to A&E as soon as possible. It was a<br />
Bank Holiday weekend but I did go on the<br />
Monday. There I was told the protruding<br />
nerve was something I was born with and<br />
the problem must be further in. I was sent<br />
for an MRI. Following that, I was told<br />
to attend for a CT scan of my pituitary. I<br />
looked on line and found pituitary tumours<br />
… and a list of nearly all my symptoms!<br />
Getting a diagnosis at last was a relief but<br />
the prospects were scary - would they have<br />
to take my brain out to get to it?<br />
Fortunately, I live a bus ride from a major<br />
hospital, which has an endocrinology<br />
department. I met the team in the first<br />
week of October and was in surgery<br />
within ten days. The endocrine specialist<br />
nurse said later that, when she first saw<br />
me, she was surprised I hadn’t been an<br />
emergency admission. The first relief I<br />
had was being prescribed hydrocortisone,<br />
which brought my appetite back to<br />
normal. The operation returned my<br />
vision. The neurosurgeon was brilliant<br />
and it was the first time ever that I saw a<br />
consultant after the operation. He’s a star.<br />
So was the endocrine nurse. I spent the<br />
next month recuperating at my brother’s.<br />
Hernia op<br />
Further treatment was delayed because I<br />
also had a hernia following my sciatica.<br />
There should be a warning given to patients<br />
using a lot of codeine phosphate about<br />
the dangers of long-term constipation!<br />
For a while my thyroid was overactive,<br />
which meant I couldn’t be given a general<br />
anaesthetic, so that operation was delayed<br />
until the thyroid quietened down. Once<br />
that was out of the way, my radiotherapy<br />
could begin.<br />
This had its own consequences - it<br />
seemed to have inflamed the Eustachian<br />
tube of my right ear. I became partially<br />
deaf on that side and developed tinnitus.<br />
The deafness subsided gradually but the<br />
tinnitus remains, though it’s just a hiss and<br />
can be ignored.<br />
Acromegaly diagnosed<br />
My condition was diagnosed as<br />
acromegaly - too much growth hormone.<br />
That remains but the other hormones are<br />
more or less non-existent. I was told that<br />
the tumour had been growing for three<br />
or four years and the endocrinologist said<br />
he could see changes in my face from<br />
before that time. All I notice is that I<br />
now possibly have two ‘horns’ growing<br />
at the edge of my eyebrows which may<br />
not have been there before. My shoe size<br />
might have increased as well, but that<br />
may just have come from not having my<br />
feet measured previously. To treat this I<br />
was prescribed Somatuline (lanreotide)<br />
every three months. Over the next few<br />
years I experienced a rollercoaster of<br />
effects each time I had that injection. It<br />
was exhausting. In the end I asked for a<br />
change of medication and am now on<br />
cabergoline and the ups and downs are<br />
less extreme. I’m sure this was a relief to<br />
my GP because those Somatuline shots<br />
cost £900 a time!<br />
Fatigue<br />
As I’m sure you’re all aware, the effects<br />
of these conditions are many and varied<br />
and likely to be unique to each individual,<br />
however some things seem to be common.<br />
Fatigue is one - I often have to lie down<br />
in the middle of the day, even if I haven’t<br />
done much. One curious thing is that my<br />
legs feel tired when I start walking but<br />
improve over time. The other common<br />
factor is mood swings. I regularly am hit by<br />
waves of emotion, which can be difficult<br />
to discriminate - grief, rage, almost mania<br />
and sexual arousal. I make female friends<br />
laugh by describing it as continuous PMT.<br />
One curious thing is having a wave of<br />
despair when I kneel down … and it’s<br />
not just the thought of the strain on my<br />
knees when I have to stand up. This can<br />
drain my energy too. Apart from that I’m<br />
active, fit and well, considering I’m in my<br />
late 60s. To date, the tumour continues to<br />
shrink. Life is different but copeable. I go<br />
to the Local Support Group meetings and<br />
campaign to stop the government selling<br />
off the NHS.<br />
Rare condition<br />
The reason it took so long to diagnose<br />
my tumour is that this is a fairly rare<br />
condition. My GP took my complaints<br />
seriously but she’d never come across this<br />
before. So it’s important to give your GP<br />
as much information as they’ll tolerate<br />
about pituitary conditions so that they’ll<br />
be better prepared when the next case<br />
appears ■<br />
Pituitary Life | spring 2017
Patients’ stories<br />
15<br />
Anastasia’s story<br />
On the front cover of January<br />
2007 edition of Pituitary Life,<br />
we featured a photograph of a<br />
five year-old girl meeting with Their<br />
Royal Highnesses, The Prince of<br />
Wales and The Duchess of Cornwall,<br />
whilst she was in Great Ormond Street<br />
Hospital. The little girl was Anastasia,<br />
whose story about her DI was then<br />
included in the January 2008 edition.<br />
We are delighted to hear how she is<br />
now, almost 16 years old.<br />
My name is Anastasia. My Dad helped<br />
me with this article by asking me a few<br />
question about my life with diabetes<br />
insipidus (DI) as a teenager:<br />
Where were you born and<br />
where do you live now?<br />
I was born in Kent, England and lived<br />
there until I was six years old. I then<br />
moved to Michigan in the United States<br />
and have lived there until now.<br />
How old are you now?<br />
I am 15 right now, but turn 16 on 31<br />
January 2017<br />
What do you love to do?<br />
Music is my passion, and I have been in<br />
love with singing and the piano since I<br />
was a four or five. I hope to take a degree<br />
in music at college. I also ride horses,<br />
particularly jumping, which I have done<br />
since I was around nine or 10.<br />
When and how were you<br />
diagnosed with DI?<br />
I was diagnosed with DI when I was five<br />
years old, when I got to Great Ormond<br />
Street Hospital for Children, after a long<br />
journey of other doctors not knowing<br />
why I needed to drink so much water.<br />
How do you explain DI to<br />
someone?<br />
I explain DI by giving the example of a<br />
bath tub. Most people have a plug to keep<br />
water inside of their bath tub; people<br />
with DI don’t have a plug in their bath<br />
tub, causing a lack of water retention and<br />
for most cases unquenchable thirst, if not<br />
treated with desmopressin.<br />
Ana today<br />
Is having DI as a teenager<br />
different to when you were<br />
younger?<br />
Yes, I think the major factor of my DI<br />
that it has certainly levelled out a bit.<br />
Whether or not that’s the continual use<br />
of medication or hormone changes, the<br />
extremes of my DI are much less than<br />
they used to be. However, my DI does<br />
tend to get in the way more now, because<br />
I do much more activity than when I<br />
was younger and I am held much more<br />
accountable to take my medication on a<br />
regular basis.<br />
Do your friends treat you any<br />
differently because you have DI?<br />
I generally don’t bring it up to some friends,<br />
because it’s quite an easy disease to hide<br />
once you medicate. Those who know,<br />
definitely treat me differently because<br />
they can see the signs when I haven’t had<br />
my medication, and generally help me<br />
remember to take them or remind me to.<br />
What annoys you or worries<br />
you about having DI?<br />
One thing that annoys me is that I am<br />
completely dependent on<br />
desmopressin to feel comfortable.<br />
I constantly worry about having<br />
access to desmopressin, and being<br />
able to take it, because without<br />
I can barely function without<br />
having a bathroom or water to<br />
drink nearby.<br />
Do you think DI will stop<br />
you doing anything?<br />
I think it might stop me doing<br />
things if my access to a water<br />
or so on is deprived, however it<br />
generally doesn’t put a hindrance<br />
on my day to day life and<br />
probably won’t do.<br />
Do you ever wonder<br />
why me, or seeing as DI<br />
is really very rare?<br />
I did when I was first diagnosed<br />
with DI, however I don’t really wonder<br />
about it anymore. My DI is especially<br />
quite rare because they don’t know the<br />
cause of it at all, so I used to wonder why<br />
I happened to get the disease.<br />
What does your family think<br />
about it all?<br />
I think when I was younger and my<br />
condition was a little more extreme,<br />
everyone was worried. Now I don’t think<br />
my family is too concerned, other than<br />
me keeping on top of my medication<br />
which is an ongoing conversation in my<br />
household.<br />
Pituitary Life | spring 2017
16 patients Professional Patients’ stories articles<br />
What advice would you give<br />
someone with DI?<br />
I think a major piece of advice I have is<br />
to stay on top of your medication. The<br />
more routine it gets for you, the easier it<br />
will get, and you won’t have to deal with<br />
the uncomfortableness that comes with<br />
not having it.<br />
Anything else you would like<br />
to say?<br />
I would like to conclude that you have<br />
the power of not letting DI bring you<br />
down or hinder your life. You just have<br />
to regulate it and be open about it with<br />
others so not only can you help yourself<br />
but others can help you too.<br />
...and a note from Dad, who would like<br />
to thank Pituitary Life and Pat McBride<br />
for her support in Anastasia’s diagnosis<br />
and for continuing to be interested in<br />
her life, as she blossoms into a beautiful<br />
and talented young lady knowing that DI<br />
will always be there, but can’t stop her<br />
dreams ■<br />
Alfie’s story Written by Conor Watts, Alfie’s dad<br />
My son, Alfie, was born on 30<br />
December 2014. His mother<br />
and I were together at the<br />
time, and were both excited and<br />
nervous about having a little baby to<br />
be responsible for. He was 7lb 1oz and<br />
looked a picture of health. My partner<br />
wanted to breast feed but Alfie was<br />
not feeding too well, so after two days<br />
he was discharged home on formula<br />
milk.<br />
Alfie seemed to be quite a quiet baby,<br />
and my mother even compared him to<br />
me when I was a baby. However, he still<br />
wasn’t feeding as he should and his colour<br />
was quite yellow. He hadn’t been home<br />
a day when we got in contact with the<br />
midwife to let her know as our concerns<br />
were growing. She came that day and<br />
admitted him immediately to ward 31,<br />
Prince Charles Hospital.<br />
Low blood sugars<br />
On admission, his blood sugars were<br />
extremely low at 1.3 and he was very<br />
drowsy. He was put on intravenous<br />
fluids and had two-hourly pinprick<br />
blood tests to check his sugar levels.<br />
We were very upset and anxious,<br />
not knowing exactly what we were<br />
dealing with.<br />
Alfie was then seen by a visiting<br />
endocrinologist who happened<br />
to be carrying out a clinic in<br />
Prince Charles Hospital. It was then<br />
that it was explained that Alfie may<br />
have a condition called<br />
panhypopituitarism,<br />
which is very rare and he would need an<br />
MRI scan of the brain. This was done<br />
a day or so later, but in the meantime<br />
Alfie had a cortisol level checked and this<br />
confirmed the condition.<br />
It was a very upsetting time, especially<br />
when the realisation kicked in that Alfie<br />
would have life-long daily medications to<br />
take, which were needed to keep him well,<br />
and he would need more care than a child<br />
would usually require.<br />
Lifeline for the family<br />
We were given an appointment to see<br />
Chris Davies in the University Hospital<br />
of Wales, who is an endocrine specialist<br />
nurse, and she taught us how to administer<br />
a hydrocortisone injection in case of<br />
emergency. The whole family was given<br />
this training, and Chris has been a lifeline<br />
for the family ever since! She has seen us<br />
a number of times since and is always at<br />
the end of the phone whenever we need<br />
advice or help concerning Alfie.<br />
When Alfie was six months old, my<br />
partner and I split up and Alfie came to<br />
live with me. We now live next door to my<br />
mother and father, which is ideal as they<br />
are there for us whenever we need them.<br />
We gradually came to realise that Alfie<br />
had a turn in his right eye, and he was<br />
referred to the eye clinic. It was there<br />
that we were made aware that Alfie can<br />
see very little out of that left eye, and<br />
can probably only see light and dark.<br />
The ophthalmologist feels that there is<br />
nothing that can be done for this as it<br />
is related to the panhypopituitarism and<br />
Pituitary life | spring 2017
Professional news Patients’ stories articles<br />
17<br />
the optic nerve in that eye is severely<br />
under-developed. The right eye is also<br />
affected but Alfie is able to see, and that’s<br />
what matters to us. He has recently been<br />
prescribed glasses, which look so cute on<br />
him, and these may help with the squint,<br />
but it may be that he will require surgery<br />
for this at a later date.<br />
Regular monitoring<br />
Alfie is monitored regularly in the<br />
paediatric endocrinology clinic, and it was<br />
there that it was decided that Alfie would<br />
also need growth hormone injections. We<br />
had noticed that Alfie wasn’t growing as<br />
he should be and all the children in his<br />
playgroup were getting bigger but he<br />
wasn’t. He is still in aged 12 months<br />
clothes, and he is now aged 2! So we<br />
underwent training for this, and Alfie was<br />
started on the growth hormone recently.<br />
He doesn’t like it, but it is just another<br />
thing that we need to do.<br />
Ambulance trip<br />
I don’t think we realised the extent of this<br />
condition until quite recently, just before<br />
Christmas to be exact. Alfie had been<br />
unwell with a cold for a couple of days<br />
prior and developed a cough, so he was<br />
already on double dose hydrocortisone,<br />
which is the first step in helping him<br />
through an illness. However, my mother<br />
had him that night and the following<br />
morning, as I had work, and whilst<br />
placing him in his pram to take him to see<br />
the GP for his cough, he became vacant<br />
and his eyes started rolling back. He was<br />
drifting in and out of consciousness and<br />
was like a ragdoll. An ambulance was<br />
called and my grandparents came to help<br />
my mother, who was obviously distressed.<br />
She realised that she needed to give him<br />
the emergency injection and managed<br />
to administer this as soon as possible.<br />
However, she expected him to respond<br />
quickly to the injection but he didn’t, and<br />
he was not much better by the time the<br />
ambulance arrived. He started vomiting in<br />
the ambulance and was still very drowsy.<br />
He was admitted to ward 31, where a line<br />
was put in and on testing his blood sugars<br />
had fallen to 1.1.<br />
With treatment, it was amazing how<br />
quickly he recovered and Alfie was allowed<br />
home the following day. The doctor found<br />
that Alfie had tonsillitis and an ear infection,<br />
and he was discharged on antibiotics and a<br />
throat spray. However, the antibiotic gave<br />
him diarrhoea and, on the advice of the<br />
hospital, this was stopped as he could fail<br />
to retain the hydrocortisone which could<br />
make him ill again.<br />
Repeat MRI<br />
Alfie has since recovered but always seems<br />
to have a cold or cough. It is very difficult<br />
sometimes to know when to double his<br />
steroid and how long to keep this up for,<br />
but we are gaining the knowledge needed<br />
all the time. Alfie will have a repeat MRI<br />
this year, as the original one was not<br />
clear enough to reveal the extent of the<br />
condition. What we do know is that we<br />
wouldn’t be without him for anything<br />
and he is such a gorgeous, happy and<br />
intelligent little man!<br />
I found The Pituitary Foundation to be<br />
a great source of support and information<br />
for both I and my family and we wanted<br />
to give something back. It was at this<br />
point we decided we wanted to do some<br />
sort of fundraising and after meeting<br />
with Jay Sheppard (Fundraising Manager)<br />
who lives near us, it was decided that me<br />
and my family would set up a fundraising<br />
group to try and raise money but also<br />
awareness in the local community.<br />
Fundraising group<br />
Last September, the Mountain Ash<br />
Fundraising Group was formed and the<br />
first event was the Chepstow Stampede<br />
where I, my mother, my girlfriend and 16<br />
other family and friends raised £1,200.<br />
Then just before Christmas, coincidentally<br />
on the night Alfie was rushed to hospital,<br />
my gran and her skittles team organised<br />
a charity night that raised £800. Also, a<br />
local social club raised £300 towards our<br />
fundraising and we are looking at things<br />
that we can do in the near future ■<br />
The Pits – Liz’s book<br />
One of our members has written a book about her pituitary journey. If<br />
you email Liz at stockley539@btinternet.com this can be purchased<br />
for £8.00 directly from Liz, through Paypal. You can also send a<br />
cheque made payable to Liz which we can forward to her. Liz is very kindly<br />
donating half of the sales to us and has generously sent us £100 so far.<br />
This is an excerpt from the very beginning:<br />
‘I didn’t go home when I finished work at lunchtime today. All morning the sunlight had been dancing<br />
outside my classroom windows, calling me out, and I was tired and irritated by a noisy class, so I escaped when<br />
the bell rang and drove three miles through the autumn sun to the beach. It’s hard to know when a story really does<br />
begin. That day with its bright September sun and cleansing wind was when I realised that there was a story about to start, the day when I accepted<br />
that something was wrong. But I suppose it had really started long before that ’ ■<br />
Pituitary Life | spring 2017
18 Professional Raising awareness articles<br />
Christmas update<br />
We would like to thank everyone who supported<br />
us during Christmas. Whether you purchased<br />
cards, sold raffle tickets, ordered merchandise<br />
or simply donated to our Christmas Appeal we cannot<br />
thank you enough. We managed to raise £17,029 over<br />
the festive period and this would not have been possible<br />
without your help.<br />
Christmas Appeal 2016<br />
The 2016 Christmas Appeal raised £3,153. We will also be able<br />
to claim Gift Aid on top of many of these donations, so it’s<br />
likely that we will have generated almost £4,000 through this<br />
appeal. We appreciate each and every donation and whether you<br />
gave £1 or £100, we really cannot thank you enough.<br />
Rotary Charity of the Year<br />
Christmas merchandise<br />
Christmas orders totalled £6,377 which<br />
is phenomenal but what’s more, many of<br />
the generous people placing orders also<br />
made donations as well as their orders. These<br />
donations totalled £1,730.<br />
Office Volunteers – Thank you!<br />
We would like to say a huge, heartfelt thank you to all of our office<br />
volunteers for their help during the festive period. Thank you to<br />
Mike and Anne Griffin, Pat Broad, Lucy Clifton, Phil Rouse<br />
and Stephen Hurley. They worked tirelessly to ensure that all<br />
orders were sent out in a timely fashion as well as helping to stuff<br />
envelopes and folding all 6,000 raffle ticket stubs for the Christmas<br />
appeal mailing and we are indebted to them all for their support ■<br />
Milton Keynes Grand Union<br />
Rotary Club President Susan<br />
Jackson chose us as the<br />
charity of the year raising over £1,500<br />
just halfway through her term as<br />
President. Thank you to all members<br />
and particularly Susan for nominating<br />
us. Here is what<br />
Susan had to say:<br />
“In July 2016 I became<br />
president of Milton Keynes<br />
Grand Union Rotary<br />
Club and have chosen The<br />
Pituitary Foundation as my charity for the year.<br />
The Foundation is close to my heart because my<br />
husband, Tim, has hypopituitarism. Eventually<br />
diagnosed in 1998, Tim had coped stoically for<br />
two and a half years with a range of symptoms,<br />
which sometimes sent him to his GP, but generally<br />
left him in a state of always feeling unwell. These<br />
included mood-swings, fainting and tiredness,<br />
joint and chest pains. Eventually a GP referred<br />
him to an endocrinologist in Oxford. The relief<br />
of obtaining a diagnosis and impact of starting<br />
treatment was enormous.<br />
Since then, Tim’s learned to manage his<br />
condition pretty well. But it’s something<br />
that colours our lives and that’s why I had<br />
no hesitation in choosing to support The<br />
Foundation in my Rotary activities as Club<br />
president. I kicked off by doing a sponsored<br />
loop-the-loop in a glider back in August.<br />
This was organised by the Stony Stratford<br />
and Wolverton Rotary Club, with half of<br />
what I raised going to End Polio Now (a<br />
Rotary-supported charity) and the rest<br />
(£500) to The Pituitary Foundation. This<br />
was followed by a fund-raising quiz night<br />
in November. Other fund-raisers we have<br />
coming up are a race-night on 17 February<br />
and a barn dance on 31 March. If you’re in<br />
the MK area and would like to come along<br />
and join in the fun, then please email me<br />
at susan.jackson<strong>35</strong>@bt.internet.com for<br />
more details.<br />
Milton Keynes Grand Union Rotary<br />
Club also jointly organises an annual fundraising<br />
cycle challenge – the extra mile<br />
challenge. This is held over a weekend in<br />
September, usually in France, and this year<br />
will be in Brittany (see www.extra-mile.<br />
org.uk for more information). The event<br />
has raised £1.25m over the last 13 years<br />
for a wide range of charities, and in 2017,<br />
a proportion of the funds raised will be<br />
donated to The Pituitary Foundation. It’s<br />
a team relay event, so if you like cycling<br />
and fancy combining it with fund raising<br />
and a weekend break in France, we’d be<br />
happy to welcome you!”<br />
If you belong to a group or society<br />
such as a Rotary Club, Inner<br />
Wheel, Ladies Circle, Women’s<br />
Institute or indeed anything else,<br />
then would you consider raising<br />
funds on our behalf. Whether that<br />
is by nominating us as your chosen<br />
charity, just like Susan did, or simply<br />
by holding ad hoc fundraising<br />
events. If you would consider this<br />
please email jay@pituitary.org.uk ■<br />
Pituitary Life | spring 2017
Wall of thanks<br />
19<br />
Isabella Andrews Appeal<br />
Fund - A special thank you<br />
Over the past three years Isabella’s family<br />
have worked tirelessly to raise nearly<br />
£20,000 towards the “Isabella Andrews<br />
Appeal Fund”. Our Chief Executive,<br />
Menai Owen-Jones, presented them<br />
with a certificate of appreciation to<br />
acknowledge this. Thank you all and we<br />
look forward to seeing you all again at<br />
the annual golf event in May!<br />
Pictured are just some of those involved<br />
with the fund-raising. Our Chief<br />
Executive Officer, Menai Owen-Jones,<br />
presenting the family with a certificate<br />
of appreciation, Kelly Park (Isabella’s<br />
mum), Lynne Crawshaw, Steve<br />
Crawshaw, Mary Park (gran), Isabella<br />
Andrews, Maisie Andrews (sister) and<br />
Garry Park (grandfather)<br />
Firework display - Windsor<br />
Fundraising Group Leader, Gemma<br />
Simpson, managed to persuade<br />
the organisers of the Eton Wick<br />
firework display to raise funds<br />
for The Foundation and in turn<br />
they raised £580. Her son Oscar<br />
collected the cheque on our behalf<br />
Carol singing - Thanks to Helen<br />
Cowen and the Sheffield singers’<br />
community choir who sang carols at<br />
their local pub raising £88.33!<br />
Waitrose Community Matters<br />
- Thank you to shoppers at Waitrose<br />
stores around the UK who voted for<br />
us in Waitrose Community Matters<br />
schemes. We were fortunate to receive<br />
over £2,000 as a result. Here’s volunteer,<br />
John Daly, collecting a cheque for £230<br />
from Waitrose Kings Hill<br />
Chepstow Stampede – We were<br />
thrilled to have a team of <strong>35</strong> people join<br />
us at the Chepstow Stampede 5K and<br />
10K obstacle course. Our staff team was<br />
well represented with Jay Sheppard, Fraser<br />
Cardow, Emily Mullen, Sian Pitman and<br />
Martin Cookson all taking part. Obstacles<br />
ranged from giant hay stacks to freezing<br />
cold muddy puddles. As this event was at<br />
the end of October, it was not for the faint<br />
-hearted. We are delighted to say that our<br />
team of participants raised over £3,000<br />
between them<br />
Jingle Bell<br />
jogging<br />
- Jane<br />
Brassington<br />
completed the<br />
‘Windermere<br />
Jingle Bell jog’<br />
raising £130<br />
Keep on running - Elaine<br />
Bates and her family took on the<br />
Great South Run and raised £510.<br />
Many thanks to all of you<br />
Britney the Tumour - Pituitary<br />
patient, Charly Clive and her friend, Ellen<br />
Robertson, wrote a play called “Britney”<br />
that featured at the Edinburgh festival<br />
as well as Broadway and received high<br />
accolades. They donated a percentage of<br />
ticket sales to The Pituitary Foundation<br />
and managed to raise £2,500. Pictured<br />
here are producer, Alex Cartlidge, Charly Clive,<br />
our Fundraising Manger, Jay Sheppard, Ellen<br />
Robertson and director, Emily Burns<br />
It’s a kind of magic….Phillip Young has<br />
been wowing audiences by performing magic<br />
for us and asking for donations. Phillip has<br />
raised the magical amount of £850!<br />
Christmas fundraising –<br />
Alison Robshaw and staff at Newly<br />
Weds Foods Ltd in West Yorkshire<br />
managed to raise £628.91<br />
Our thanks to Caroline<br />
Fiennes who held a clothes and<br />
jumble sale on our behalf and<br />
managed to raise £80 ■<br />
Pituitary life | spring 2017
20 Professional Raising awareness articles<br />
Masquerade Ball 2016<br />
Saturday 15 October 2016 was a monumental day for The Pituitary Foundation. Our inaugural<br />
Masquerade Ball took place at the luxurious Millennium Mayfair hotel in London. It was a night<br />
never to be forgotten.<br />
Above: Harry Cruz, magician entertains<br />
We welcomed 250 guests from<br />
all over the UK and every one<br />
had the time of their lives<br />
with some truly incredible feedback<br />
received after the event.<br />
Guests were welcomed with a<br />
champagne reception upon arrival where<br />
harpist, Catrin Meek, set the mood. They<br />
went through to the exquisitely decorated<br />
Ballroom. Our host for the evening was<br />
BBC presenter, John Inverdale, who was<br />
excellent throughout the night with his witty<br />
comments and jovial humour. Magician,<br />
Harry Cruz, who is part of the creative<br />
team for ‘Dynamo: Magician Impossible’,<br />
wowed our guests as he walked through the<br />
champagne reception before moving from<br />
table to table as our guests were seated,<br />
amazing them with his repertoire of magic.<br />
It was a celebration; a celebration of<br />
our charity and celebration of how far<br />
we have come together over the years.<br />
We heard speeches from Chief Executive<br />
Officer, Menai Owen-Jones, and Chair of<br />
our Trustees, Jenny West, who welcomed<br />
our guests and explained the reason<br />
for the theme, which was that because<br />
pituitary conditions are a hidden illnesses,<br />
‘Masquerade’ represented this. The Chair<br />
of our Organising Committee, Clare<br />
Sumpster, spoke from the heart about her<br />
experience as a parent of a pituitary patient,<br />
which really made guests appreciate why<br />
they were there and why their donations<br />
made a difference. The final speech<br />
quite simply left the audience in awe as<br />
Patch Russell and Geordie Tulloch spoke<br />
about their Edinburgh to Paris challenge.<br />
Above: the ball in full flow<br />
Pituitary Life | spring 2017
news Raising awareness<br />
21<br />
Above: Foundation staff and volunteers<br />
They cycled from Edinburgh to Dover,<br />
kayaked the channel to Paris and then ran<br />
the equivalent of five marathons in four<br />
days to reach Paris. Patch and Geordie<br />
managed to raise a phenomenal £60,000<br />
of which The Foundation received<br />
£20,000. Our guests were mesmerised<br />
by their accomplishment. Patch really<br />
made guests think when he ended his<br />
speech by saying that him and Geordie<br />
had undertaken this gruelling challenge to<br />
raise funds, now all guests had to do was<br />
to dig deep and wow, dig deep they did!<br />
Guests were treated to a sumptuous<br />
three course meal, whilst a stringed quartet<br />
set the mood as guests ate and the drinks<br />
flowed. There were laughs aplenty as John<br />
Inverdale and World cup winning rugby<br />
legend, Josh Lewsey MBE, conducted our<br />
heads and tails game.<br />
We ran a silent auction on the evening,<br />
which had its own dedicated website<br />
launched two weeks prior to the event, so<br />
that people could make bids on items even<br />
if they were not attending the event which<br />
proved incredibly popular. We also ran a<br />
live auction which was conducted superbly<br />
by our auctioneer, Mike Morrison, who<br />
we cannot thank enough. Mike really did<br />
encourage guests to bid higher. Mike is<br />
not an auctioneer by trade, but we think<br />
he should be!<br />
Some of the auction and silent<br />
auction items that we sourced were<br />
superb, ranging from signed Arsenal and<br />
Liverpool football shirts, a shirt signed<br />
by the historic English rugby team who<br />
completed a series whitewash on their tour<br />
of Australia, holidays at cottages around<br />
the UK including Devon, Scotland, and<br />
Cornwall, tickets to the Wimbledon<br />
Ladies Final 2017, a cycling experience<br />
for four people with an Olympic gold<br />
medallist, a book signed by every<br />
living UK Prime Minister, helicopter<br />
pilot lessons, art, jewellery, skiing<br />
holidays and many more fabulous<br />
items. Thanks to everyone who<br />
donated items for both our silent auction,<br />
raffle and our live auction. We appreciate<br />
that many of you, our members, donated<br />
kindly and without the generosity of our<br />
donors we simply would not have been<br />
able to raise as much as we did.<br />
We would like to take this opportunity<br />
to thank all of our Event Organising<br />
Committee for their help in the build<br />
up to this event. Thank you to Rosa<br />
Rubner, Amy Pigott, Claire Thatcher, Pat<br />
McBride, Gez Thompson, Susie Graham,<br />
Sarah Landale, Peter Landale and Jenny<br />
Raymond all of whom contributed in<br />
helping us to organise this event. Thank<br />
you also to everyone who gave up their<br />
time to help with the smooth running of<br />
the event by volunteering on the night.<br />
Thank you to Fraser Cardow, Emily<br />
Mullen, Sian Pitman, Gabrielle Welland,<br />
Rosa Watkin, Danielle Cox, Courtney<br />
Rose, Emma Watson, Lydia Golinsky and<br />
Amy Leighton.<br />
We would especially like to thank the<br />
Chair of the Organising Committee,<br />
Clare Sumpster, for her incredible efforts.<br />
Clare worked tirelessly for many months<br />
whilst we were organising this event<br />
and put in so much effort that it was<br />
unbelievable. Without Clare’s drive and<br />
determination this event would not have<br />
been the success it was. Clare really was<br />
the driving force as she brokered many<br />
great deals with the hotel and caterers as<br />
Above: ball harpist, Catrin Meek<br />
Above: John Inverdale Clare Sumpster & Josh Lewsey<br />
well as sourcing many auction items and<br />
selling many tables to friends and family.<br />
We are absolutely thrilled to announce<br />
that the inaugural Masquerade Ball<br />
generated £87,000 gross income. Of<br />
course there were many costs associated<br />
with this event so the net income to The<br />
Pituitary Foundation for us to invest in<br />
our vital services was £45,000.<br />
Our next Ball could potentially be during<br />
spring 2018. Confirmed details of this event<br />
will be in future issues of Pituitary Life. If<br />
you attended the Ball, we are certain that<br />
you will have enjoyed yourself enough to<br />
want to attend the next one. If you were<br />
unable to attend this event then you simply<br />
have to join us next time.<br />
If you work for a company that may be<br />
interested in sponsoring an event of this<br />
type or indeed if you would be able to offer<br />
anything to donate in terms of auction<br />
prizes, then we would love to hear from<br />
you, please email jay@pituitary.org.uk ■<br />
Pituitary Life | spring 2017
22 Professional Raising awareness articles<br />
Dan at The Ball<br />
A patient’s experience of going to the Ball<br />
I can’t deny — I was nervous.<br />
As I made my way into the Millenium Mayfair Hotel in Mayfair,<br />
dolled up to the nines in dinner suit and overly-large Batman<br />
mask, I reflected on how I had ended up at The Pituitary<br />
Foundation Masquerade Ball.<br />
I was diagnosed with acromegaly back in 2007 after a chance<br />
encounter with some final year medical students who, on hyperalert<br />
during an exam, spotted the common symptoms and<br />
suggested that I might have acromegaly.<br />
This wasn’t my first encounter with a rare medical condition<br />
though. I was born with Wyburn-Mason syndrome, an extremely<br />
rare vascular condition that sits around my mid-brain and<br />
affects my visual pathway, rendering me blind in one eye. More<br />
commonly known as an AVM (arteriovenous malformation),<br />
this was something I had lived with from birth and - though not<br />
confirmed - probably contributed to my pituitary condition.<br />
So as I entered the plush surroundings of the hotel and tried<br />
to figure out where I had to go (one eye and poor peripheral<br />
vision due to further sight loss; thanks Acro!), I grabbed a glass<br />
of champagne, stood to the side and observed.<br />
The room was packed with beautiful gowns and wellgroomed<br />
suits. I quietly observed everything, letting it soak<br />
in. After a few moments, a couple of volunteers from The<br />
Foundation approached me and asked if I would like to buy<br />
some raffle tickets. ‘What the heck’, I thought, and bought a<br />
couple of strips. They asked me where I had come from and I<br />
told them Bristol, and of course that got us talking because The<br />
Foundation is based there too. They asked in what capacity I was<br />
here, and I said as a patient. Whilst that was true, I also had a<br />
slight ulterior motive: I had published a memoir called Me, Myself<br />
& Eye the year before, chronicling my experiences with AVMs<br />
and acromegaly, and I was here to try and spread the word. I’d<br />
even produced some handy flyers, just for the occasion. At that<br />
point they suggested that I meet Pat McBride, Head of Patient<br />
& Family Services. I was starting to relax.<br />
We made our way into the luxurious dining area. As I took my<br />
place, I introduced myself to the people sat next to me. To my<br />
right: two empty chairs. Somehow that made me even more selfconscious.<br />
Daft, I know. I got chatting to the couple next to me<br />
about the event and I started to talk about my experiences and<br />
the book. I gave her one of my flyers. She read the excerpt from<br />
the book and laughed.<br />
On the other side of the table sat a group of four who all<br />
clearly knew each other. The couple sat next to me asked where<br />
they were from.<br />
“Birmingham”, they replied in unison.<br />
“So are we!”<br />
“I’m not”, I piped up. “I’m from Bristol.”<br />
“And what brings you here?” asked one of the girls.<br />
“Well I’ve got a pituitary condition and another very rare condition, so I<br />
wanted to show my support. How about you?”<br />
“Well I’ve got a very rare condition too!” she responded with<br />
interest.<br />
And suddenly it felt like we were about to play Rare Conditions<br />
Top Trumps and I knew that my Wyburn-Mason would be the<br />
winning card. Less than thirty cases in the last fifty years -<br />
worldwide? Not much could beat that.<br />
“Sounds intriguing”, I said. “You go first.”<br />
“Well I’ve got something called an Arteriovenous<br />
Malformation…”<br />
“An AVM?”<br />
“Yes! How do you now about AVMs?!”<br />
“I’ve got one too.”<br />
And suddenly the table went quiet and we stared at each other<br />
in disbelief.<br />
“I’ve never met anyone with an AVM!” she cried out. “This is<br />
amazing!”<br />
And with that we stood up, ran to each other and hugged.<br />
We couldn’t believe this was happening! Two people, with an<br />
incredibly rare condition, sat on the same table. She told me<br />
about her AVM which was in her leg and I told her about<br />
mine, in my brain. And that was it. For the rest of the night we<br />
chatted, laughed, told stories and of course friended each other<br />
on Facebook.<br />
And to top it all off, I won 2nd prize in the raffle! I had<br />
suddenly gone from feeling like a shadow to being on top of<br />
the world.<br />
So thank you, Pituitary Foundation, for not only providing<br />
a fantastic night but also for bringing together two very rare<br />
people in a moment of pure chance. It makes being rare just that<br />
bit more special ■<br />
Pituitary Life | spring 2017
news Raising awareness<br />
23<br />
2017 Events marketing<br />
Mountain climbs<br />
Snowdon - March 19<br />
£30 registration fee (reimbursed if over £500 is raised)<br />
£150 minimum sponsorship<br />
Join us as we scale Wales’ highest mountain. This trek takes in<br />
picturesque scenery and the path means that it is open to walkers<br />
of all abilities.<br />
Ben Nevis - 4 June 2017<br />
£30 registration fee (reimbursed if over £500 is raised)<br />
£150 minimum sponsorship<br />
At 1,345 metres (4,412 feet) above sea level, Ben Nevis is the<br />
highest point of the British Isles. We’ll take you on a route that<br />
follows an established rocky mountain track. It goes through some<br />
truly breath-taking scenery, all the way up to the summit.<br />
Pen-Y-Fan - 21 May 2017<br />
FREE registration<br />
NO minimum sponsorship<br />
Our annual Pen-Y-Fan trek is a popular challenge that raises on<br />
average £3,000. Come and join us to take in some spectacular views.<br />
This is a great walk and open to all the family.<br />
Challenges for the brave<br />
photo: Aleem Yousaf, Creative Commons<br />
Attribution-Share Alike 2.0 Generic license.<br />
Orbit abseil - 24 June 2017<br />
£30 registration (reimbursed if over £500 is raised)<br />
£250 minimum sponsorship<br />
The ArcelorMittal Orbit is the UK’s tallest sculpture providing an<br />
adrenaline-fuelled way to see London at 262 feet above the city.<br />
Your courage and sponsorship will help us support more patients.<br />
Be brave for them and enjoy a thrilling experience too!<br />
Zip World April 22 (TBC)<br />
£30 registration (reimbursed if over £500 is raised) £200<br />
minimum sponsorship<br />
Zip World Velocity is the fastest zip line in the world and the longest in<br />
Europe. This adventure takes you on the little zipper, 700M, to build your<br />
confidence before you journey up the quarry on the famous red trucks.<br />
Take in the stunning views from the top before you descend down the<br />
Big Zipper over the quarry lake at speeds reaching over 100mph<br />
continued on back cover ›<br />
Pituitary Life | spring 2017
2017 Events marketing (continued)<br />
Challenges for the brave<br />
Pituitary zipwire - 19 June<br />
£15 registration ((reimbursed if over £250 is raised)<br />
£50 minimum sponsorship<br />
Launch yourself from the 70m high cliff edge and speed along<br />
the length of the 80m deep flooded quarry. Reaching speeds up to<br />
40 miles per hour, this exhilarating ride will take your breath away!<br />
Running events<br />
How about joining “Team Pituitary” at any run during 2017? If<br />
you join “Team Pituitary” you will receive a state of the art running<br />
vest and comprehensive training guide designed to ensure that you<br />
complete the race you enter easily.<br />
Brighton Marathon - 9 April<br />
(£<strong>35</strong> registration fee £<strong>35</strong>0 minimum sponsorship)<br />
Bupa London 10K - 29 May<br />
Great North Run - Sunday 10 September<br />
(£<strong>35</strong> registration fee £<strong>35</strong>0 minimum sponsorship)<br />
Bristol Half Marathon - Sunday 17 September<br />
Cardiff Half Marathon - Sunday 1 October<br />
Alternatively you may wish to run in any event in your area, if this is the case we would love to hear from you and will support you<br />
every step of the way. Email jay@pituitary.org.uk or call 0117 370 1314.<br />
Contact us:<br />
Editor: Pat McBride: 0117 370 1315 or pat@pituitary.org.uk<br />
Patient support & Information Helpline:<br />
0117 370 1320 (Monday to Friday 10:00am – 4:00pm)<br />
or helpline@pituitary.org.uk<br />
Endocrine Nurse Helpline: 0117 370 1317 (10:00am to<br />
1:00pm and 6:00pm to 9:00pm on Mondays, also on Thursdays<br />
9:00am to 1:00pm)<br />
General enquiries for non-patient support enquiries<br />
Main switchboard: 0117 370 1333<br />
or enquiries@pituitary.org.uk<br />
Please use this number and email for:<br />
• Website and log-in issues<br />
• Publications orders<br />
• Merchandise<br />
• Conference<br />
• Any non-patient support related enquiries<br />
Membership enquiries<br />
If you have an enquiry specifically relating to membership<br />
please contact membership@pituitary.org.uk or main<br />
switchboard 0117 370 1333.<br />
Fundraising enquiries<br />
If your enquiry relates to raising funds please contact<br />
fundraising@pituitary.org.uk or main switchboard 0117 370 1333.<br />
The views expressed by the contributors are not necessarily those of The Pituitary<br />
Foundation. All information given is general - individual patients can vary and<br />
specific advice from your medical advisors should always be sought. We do not<br />
endorse any companies nor their products featured in this edition.<br />
© 2017 The Pituitary Foundation<br />
• Registered company number 325<strong>35</strong>84 • Registered charity number 1058968<br />
The Pituitary Foundation<br />
86-88 Colston Street, Bristol, BS1 5BB<br />
Working to support pituitary patients<br />
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