Kidney Matters - Issue 12 Spring 2021
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes a tribute to Kidney Care UK Chair of Trustees Professor Donal O'Donoghue who passed away due to covid-19 at the start of the year. There's also a feature on sex and relationships, how your views helped shape covid-19 national policy, medical articles on anaemia and simultaneous pancreas and kidney transplantation, and a feature interview with a transplant recipient on some of the social stigmas often faced by people with chronic health conditions within the Black, Asian and minority ethnic (BAME) community.
As well as this, we'll be looking back at two years of the Kidney Kitchen as we cook up a tasty tandoori with guest chef and RNG dietitian, Gabby Ramlan.
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes a tribute to Kidney Care UK Chair of Trustees Professor Donal O'Donoghue who passed away due to covid-19 at the start of the year. There's also a feature on sex and relationships, how your views helped shape covid-19 national policy, medical articles on anaemia and simultaneous pancreas and kidney transplantation, and a feature interview with a transplant recipient on some of the social stigmas often faced by people with chronic health conditions within the Black, Asian and minority ethnic (BAME) community.
As well as this, we'll be looking back at two years of the Kidney Kitchen as we cook up a tasty tandoori with guest chef and RNG dietitian, Gabby Ramlan.
16Breaking the silenceFEATURE INTERVIEWLiving with kidney failure is a lifelong challenge.Sabina Saeed, a transplant recipient, bravely breaks hersilence on some of the social stigmas often faced by people withchronic health conditions within the Black, Asian and minority ethnic(BAME) community. Here she takes us through her journey.How it beganOn 28 March 1981, the world welcomed two babies, my twin sister and me. We were both healthybabies. Everyone was extremely excited as we were the first twins in the family. However, fatehad something different planned for us. I was born with congenital kidney failure. Blockedureters and constant infections led to my right kidney being infected and enlarged; I was twomonths old when it had to be removed.Following years of various operations and complications, I didn’t have a growing bladder. Asa result, I had to wear nappies and had a urostomy bag for most of my school life. It was veryembarrassing, I was bullied and felt very alone. It was then that my only, much-loved kidneyfailed. I started haemodialysis and my life stood still.“It was then that my only, much-loved kidney failed. Istarted haemodialysis and my life stood still.“My transplantIn 2001, my mum offered to donate one of her kidneys to me. Following rigorous testing, wefound that she was a perfect match and I was finally transplanted. Life started to move on again.I qualified as a beauty therapist and opened my own business. It was one of the happiest andproudest moments of my life.Unfortunately, it wasn’t to last and my transplant failed in 2016. Back on dialysis and feeling sopoorly affected my ability to work. My business, that I had so lovingly built, suffered. I had nochoice but to close it. I felt I had gone back 20 years whilst everyone else moved on.I lost hope of ever having another transplant. Belonging to a BAME background, I knew all toowell that the chances of finding a potential match were slim. It is well known that not enoughBAME families consent to organ donation, resulting in longer waiting times for others like me.However, fate once again changed its course and I got the call. I was lucky enough to have asecond transplant on 15 September 2019. I will always be grateful to my donor and their familyfor giving me another opportunity. Today I am healthy and studying a nutrition course. I am verypositive about my future, but the stigma of having a lifelong disease never leaves me.My struggle with social stigmasThe social pressures of living with a chronic disease in some BAME communities can bedraining. My battle with kidney failure and the memories of me being ‘ill’ are still etched inpeople’s minds. That is how I am perceived. That is how people remember me. That is all who Ihave become, the ill child, the ill sibling or the ill friend. But I am so much more than that. I wantpeople to see me for who I am.I have a very loving family who have always supported me. They are very protective and do notwant me to get hurt. I am often told by family or community members that I should not work ortravel on my own, or even get married.Why is it that way? Why should my health stop me achieving my dreams? Why do I get rejectedbecause of my transplant?www.kidneycareuk.org
17These are the questions I keep asking myself. I havespoken to potential suitors but people think that I willbe a burden or that I am unable to look after myself.Either the person I speak to will call it off for onereason or another, or the family will intervene. I havebeen rejected many times like this and it breaks myconfidence.People are surprised at the notion that I want to getmarried, find a companion or have children. No onesuggests potential suitors, which is common practicein my community, nor do they encourage me to look.It is assumed that, because of my health, nobody willaccept me or that I do not need a partner because Ihave my family who love and care for me. I have friendsin my community with health conditions who havefound someone special, are happily married and evenstarted families. I know it can happen for me too and Iam positive it will.“That is all who I have become,the ill child, the ill sibling orthe ill friend. But I am so muchmore than that. I want people tosee me for who I am.”My futureI believe that being part of the BAME communityhas many positives. We have strong family values,close bonds, a diverse and rich culture and we cometogether at times of need. You are never alone. I amproud of my community; it is part of my identity.However, social stigmas on health issues andorgan donation are prevalent. That is why I startedvolunteering as a peer educator so that I can educatethe BAME community on not only the importance oforgan donation, but also the impact social stigmashave on people like me. Sometimes it feels like an uphillbattle, but this is a battle I am willing to fight.Article by Sumaya MasoodDeputy Editor, Kidney MattersIssue 12 | Spring 2021
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- Page 39 and 40: Sign up foryour freecopyWhether you
17
These are the questions I keep asking myself. I have
spoken to potential suitors but people think that I will
be a burden or that I am unable to look after myself.
Either the person I speak to will call it off for one
reason or another, or the family will intervene. I have
been rejected many times like this and it breaks my
confidence.
People are surprised at the notion that I want to get
married, find a companion or have children. No one
suggests potential suitors, which is common practice
in my community, nor do they encourage me to look.
It is assumed that, because of my health, nobody will
accept me or that I do not need a partner because I
have my family who love and care for me. I have friends
in my community with health conditions who have
found someone special, are happily married and even
started families. I know it can happen for me too and I
am positive it will.
“That is all who I have become,
the ill child, the ill sibling or
the ill friend. But I am so much
more than that. I want people to
see me for who I am.”
My future
I believe that being part of the BAME community
has many positives. We have strong family values,
close bonds, a diverse and rich culture and we come
together at times of need. You are never alone. I am
proud of my community; it is part of my identity.
However, social stigmas on health issues and
organ donation are prevalent. That is why I started
volunteering as a peer educator so that I can educate
the BAME community on not only the importance of
organ donation, but also the impact social stigmas
have on people like me. Sometimes it feels like an uphill
battle, but this is a battle I am willing to fight.
Article by Sumaya Masood
Deputy Editor, Kidney Matters
Issue 12 | Spring 2021
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