The Bleeding Times- Spring 2017

Spring 2017
the BLEEDING TIMES
THE WOMEN ISSUE
SPOTLIGHT:
WOMEN THROUGH
THE GENERATIONS
PERSPECTIVA
LATINA:
La Mujer Perfecta
ROADS TO
TRANSITION:
Prepping for
college
NEW
FAMILIES:
Perspective
on New
Motherhood
NYHEMOPHILIA.ORG
1

TABLE OF
CONTENTS
LEADERSHIP LOUNGE
Letter From Our ED 4
Letter From Our Board President 5
Meet Our Newest Board Members 6
Upcoming Community Events 7
NEW FAMILIES
NHF Annual Meeting 8
Perspective: New Motherhood 9
HER STORY
Carrier’s Guilt 10
Spotlight Article 12
Women Through the Generations
ROADS TO TRANSITION
Camp Little Oak
& Why Girls Camp 14
Prepping for College 16
PERSPECTIVA LATINA
La Mujer Perfecta 18
Viaje a la Infusión 19
SUPPORT SUPERSTARS
Hemophilia Hurts! 21
NYCHC 2016 RECAP 22
ASK THE EXPERT 23
2 3

LETTER FROM OUR ED
LETTER FROM ED/CHAPTER UPDATE
Dear Readers,
I am thrilled to be writing this letter to you in the first edition of our new chapter magazine. This
publication is designed to help you better connect with our local bleeding disorders community. Inside
you will find highlights from past chapter events, upcoming activities, profiles from our community, health
tips, and stories from people just like you. This magazine is made by the community, for the community,
and this is just the start.
It was March 29th, one year ago, when I walked in on my first day as the Executive Director of the chapter,
and now looking back, I am truly amazed at all the incredible things we have accomplished together:
/ Launching our first VWD retreat
/ Launching our first volunteer engagement workshop
/ Hiring a new Communications and Events Manager
/ Setting two fundraising records at the Walk and the Gala
/ Launching a new monthly e-newsletter
/ Hosting our first bilingual Back to School Event
/ Awarding five families with grants to attend the NHF Annual Meeting
/ Launching a new series of programs for teens
/ …and today we are launching this exciting new magazine
None of this could be possible without our dedicated chapter staff and the inspiring set of passionate
volunteers we have working tirelessly on these efforts. Our community has a long history of working
together to accomplish amazing things. That is why, even with major healthcare policy changes looming
as threats, I know that we will prevail, together.
If you are reading this letter and haven’t yet connected to the chapter, then there is one piece of advice
I can give—get involved! Get involved by attending chapter events. Get involved by joining a committee.
Get involved by letting us know what type of stories you want in this magazine. Get involved by signing up
to be a volunteer. Get involved by starting a walk team. Get involved by writing articles. Get involved with
our state advocacy work. Get involved by simply calling and introducing yourself.
This is your chapter and your magazine, and together we have incredible things ahead of us.
Sincerely,
LETTER FROM
OUR BOARD
PRESIDENT
Aloha!
These long winter days are making me wish for sun and warm
weather which is why I’m greeting you in the Hawaiian spirit.
I’ll never forget one of my best friends in college who was
from Honolulu and wise beyond her years. She taught me
many important life lessons. Along with showing me how to
really chill out and make surprisingly delicious spam musubi,
she taught me about “ohana,” a term used to describe love
within families and communities beyond just blood relations.
Those of us affected by bleeding disorders have learned to
value, and even depend upon, the support we gain from our
communities. That support is more important than ever in
these challenging times.
At the New York City Hemophilia Chapter, our core mission and the basis for our existence is, and has always
been, to foster community. We are constantly challenging ourselves to find new and impactful ways to support
our members. I’m so proud of the progress we’ve been making in many areas, including communications. As
such, we’ve taken the bold leap to publish a new magazine, The Bleeding Times, that starts with our immediate
community but should reach well beyond it. We hope it will serve as an extension of NYCHC, providing useful
information and guidance, and perhaps even some entertainment and inspiration from time to time.
As you’ll see, our inaugural issue is chock full of great content and focuses on a topic near and dear to my heart—
girls and women with bleeding disorders. Additionally, it covers a wide variety of issues critical to our community,
including being a new hemo mom, learning to infuse, attending camp, prepping for college, and much more.
Please enjoy it and reach out to us with your feedback and ideas for future editions. We look forward to hearing
from you. Until then, stay warm and be well.
Mahalo,
Wendy Chou
President
NYCHC
Jeremy Griffin
Executive Director
4 5

ROSE BENDER
Interesting Fact: Rose is a sophomore
at Yale, a licensed EMT, and a member
of the Yale Magic Society.
BRIAN DIXON
Interesting Fact: Brian holds a BS in Mechanical
Engineering from Florida A&M University, an MS
in Mechanical Engineering from the University of
Dayton, and an MBA from the Darden School of
Business at the University of Virginia.
March 5: Walk Kickoff @
Bareburger
March 8-10: Advocacy Days
and Training–Washington D.C.
March 19-20: Advocacy Days
and Training–Albany
March 31: Christopher’s
Hemophilia Benefit
April 2: Teens Volunteer with
CityMeals on Wheels
MEET OUR NEWEST
BOARD MEMBERS
April 6-9: HFA Symposium
April 11: Chapter Kids Playdate
April 23: Spring Event
April 28-30: Carriers Retreat
hosted by BDANENY
May 21: HANY’s Day at the Races
ERIN CIRELLI
Interesting Fact: Erin and her family have
organized and ran a very successful Hemophilia
Walk in New Jersey for the last 8 years raising
over $40,000 for medical research for a cure
and/or better treatment for hemophilia.
BARBARA GORDON
Interesting Fact: Barbara is a clinical social
worker in a comprehensive program similar
to HTC, but for individuals and families living
with ear or throat disorders.
June 4: NYC Hemophilia Walk
June 25: Latino Picnic
August 23-26: HNF Annual Meeting
For more information
about any of these events,
visit our website:
nyhemophilia.org
LEARN MORE ABOUT OUR BOARD AT WWW.NYHEMOPHILIA.ORG/ABOUT.NYCHC/LEADERSHIP
6 7

CHRISTINE
AND TYLER:
NHF Annual Meeting
PERSPECTIVE:
New Motherhood
BY LISA SCHWARTZ
My family decided to attend our first NHF annual
convention in Orlando, Florida, this past July. My daughter,
Tyler, has VWD Type 2b and we have only recently become
actively involved in our local NHF chapter. We were very
excited to attend and meet new people to share our stories
with. Our goal was to make connections with others in the
bleeding community and talk with people who know what
it’s like to live with a bleeding disorder.
NHF did a fantastic job with the convention. The venue was
great and very family friendly. There was a wide variety of
sessions to attend on numerous subjects, and I learned
something new and different in every one. We met people
from all over the country and having spoken to so many,
it truly made me realize how lucky we are to live where we
do. We are so fortunate to have our HTC so close to our
home and to be a part of such a great NHF chapter. There
are so many other people that not only have difficulty living
with the complications of a bleeding disorder, but also have
to deal with geographically not being close to the doctors
and facilities that can help them the most.
I would highly recommend attending an annual meeting if
you ever get the chance. My daughter thinks of it as one of
the best things she has ever done, and it gives me so much
joy to know that she loved and appreciated the experience.
We hope to attend many more in the future.
Thanks again for helping us attend and giving us this great
opportunity to connect with other families and be made to
feel like we are not alone.
Christine Samokishyn (Tyler Loftus’s mom)
It has been almost a year since hemophilia came into our
lives, and I am just sick. That is, sick of stressing about all
the things that could happen and worrying about what
my son’s life is going to be like. My birth experience in
March 2016 was extremely distressing. My pregnancy and
delivery went very well—my beautiful, alert, and energetic
baby boy was full term and safely delivered via scheduled
C-section. After spending just one blissful hour with him,
he was whisked away for the standard battery of newborn
tests in the nursery...never to return to our room. There
was some minor bleeding on his groin that just wouldn’t
stop, which led to a declaration of “unspecified coagulation
disorder” and abnormal PTT (i.e., “time to clot”) result, which
led to the doctors telling us “you have no family history
of bleeding disorders and your baby seems fine, so the
PTT test was probably just done wrong and most likely
everything’s great,” which led to a diagnosis several hours
later of severe Hemophilia A, which led to my baby boy
being rushed to the NICU and receiving his first dose of
factor that evening when my mother noticed a gray bruise
was covering his entire back. This was my first 24 hours of
parenting and it was devastating, plus the fact that I was
recovering from C-section pain and could barely sleep and
walk. Instead of posing for the hospital photographer and
learning how to change diapers and reveling in the joys of
new parenthood and the miracle of our sweet baby boy,
my husband and I spent our remaining time in the hospital
meeting with doctors and social workers and receiving a
crash course on hemophilia care, the science of bleeding
disorders, and how to mourn that we did not have the
“perfect child”. Not exactly how you expect to spend your
first few days of parenthood.
Four days after Ross was born, we all arrived home
together and into a giant cloud of “WTF.” My husband
and I had genetic testing done both before and during
my pregnancy, but for some reason the dozens of
disorders they screened for included Hemophilia C but
not Hemophilia A or B. We decided we would try to handle
things constructively by doing research and becoming
involved in the hemophilia community. What I took away
from my internet searches and conversations with families
left me distraught. It was so encouraging to learn about
all the incredible advances in treatment and meet many
wonderful people in the community. But we were told
that we had “won a lottery that no one wants to win,”
that “having a baby with hemophilia is extremely hard”
and Ross “would have his struggles,” and that we “should
always have a bag for the ER packed and ready to go.”
It was also implied in conversations that our proactive,
practical attitude so early on was odd and we were told
that it’s “okay not to be strong”. Not very comforting things
for new parents to hear, especially when we had no idea
what we were doing. So we went on with life, both of us
working our busy, full-time jobs, finding a wonderful nanny
for Ross and becoming involved with fundraising efforts
and event planning for the NYC Chapter. But deep down
I was incredibly frightened, sad and obsessed about his
condition, which often kept me up at night (even on those
precious evenings when the baby slept in).
Nearly one year later, I am surprised and incredibly grateful
to have a healthy, happy, and thriving almost-toddler
who is normal in every way. He loves crawling, standing,
exploring, going to classes, playdates, flying on planes,
riding the subway, eating at restaurants, and playing with
his daddy’s guitar. Other than standard coughs and colds,
he’s had no medical issues. We have baby proofed and he
is always carefully watched by at least one adult, but we
do not keep him in a bubble or bubble wrapped and we
encourage him to explore his environment. We are active
people who like to be out and about and social, so Ross
is too and it has worked out great. As we celebrate the
very momentous occasion of Ross’ first birthday, I want
to release myself from my self-imposed prison of fear
and keep my focus on being Ross’ mommy. Every child
experiences hemophilia differently and what happens
in one family will not necessarily happen in yours. It is
so important to keep this in mind when reading internet
support groups or attending community events, which
of course can also provide a wealth of knowledge.
Parents that are new to hemophilia need to be exposed
to the incredible stories of success and resilience in the
community and to the many medical breakthroughs that
are enabling people with bleeding disorders to live lives
that are not only ordinary but are often extraordinary….
kids with hemophilia are growing up to be doctors, lawyers,
entrepreneurs, cyclists, mountaineers, and all sorts of
cool and interesting things. And with an enormous debt
of gratitude for the generations before us that have paved
the way for the medical treatment that now exists, I am so
honored to do my part to actively fundraise and advocate
for the community (and will encourage Ross to do the same
as he gets older).
8 9

CARRIER’S
GUILT
BY JASMINE L. EAGLIN
Our Story
Our son’s diagnosis came with an abundance of guilt. After
two full days of labor and four hours of a grueling delivery,
the first moments of our son’s life—moments that should
have been filled with relief and joy were instead riddled
with fear and remorse. It was a traumatic delivery; the
epidural had long worn off and no matter how hard I tried,
my baby would not exit the canal. My instincts screamed
for a C-section—in fact, I demanded one because the
process didn’t feel quite right. I had a great team in place,
but to their knowledge (and my own), there was no medical
emergency that required surgical intervention. Yet, by the
fourth hour of delivery, the level of my mental and physical
exhaustion required medical assistance and I opted for a
vacuum extraction. I’ll never forget the joy on my husband’s
face when they said, “It’s a boy!” Aloysius was a whopping
9.2 pounds. Sure, pregnancy was uncomfortable and labor
seemed impossible but he was finally here, happy and
healthy. I genuinely thought the hardest part was
behind us.
For years before my son’s birth, I never understood I could
potentially be a carrier. What I did know is that I have three
cousins who were managing their severe hemophilia. I
knew they had to be careful physically. I knew they had
spent a substantial amount of time in the hospital during
their youth. I knew they had to take special medication
for bleeding episodes. And I knew this condition primarily
affected boys. Unfortunately, I had limited knowledge about
what that meant for me. My mother is the middle sister
and has two daughters. Her oldest and youngest sisters
have three sons between them; all with severe hemophilia
A. And we have no prior family history of hemophilia, which
we could track past their diagnosis. My mother watched
as her sisters struggled raising children with this bleeding
disorder and for a long while assumed she was lucky
because it skipped us. The reality, however, is it was just a
matter of time before hemophilia resurfaced again.
When we found out we were expecting, my husband and
I decided to keep the gender of our first-born a surprise
until delivery day. You don’t get too many happy surprises
in life and we wanted to experience this one, even if it was
old-fashioned of us. Hemophilia had never crossed my
mind in a serious way. After all, I naturally assumed that
if hemophilia were truly a danger to my child, or myself, I
would have known by that point. Today, I realize that there
were a few red flags once I finally had my son in my arms.
His head was unusually large and balloon shaped. At the
foot of the hospital blanket in which he was wrapped, a
large stain of blood tarnished the sheet at the area of his
heel stick. I remember the nurses urging me to get rest and
taking my son to be cared for in the nursery, but something
wasn’t right.
It took only twelve hours for those vague feelings of unease
to turn to panic when my son was admitted to the NICU. I
remember being woken sometime between three and four
in the morning. The physician on duty explained that blood
was pooling to my son’s head and he required a blood
transfusion. There was a severe concern over potential
brain damage if the bleeding was intracranial. I looked at
her for a minute in shock and my eyes filled with tears as
I said the words “hemophilia…it has to be hemophilia.”
The physician’s expression shifted from one of concern
to curiosity as she asked my why I thought so. “Because I
have three cousins with hemophilia.” I remember the guilt
that washed over me in that instant: Why hadn’t I realized
beforehand? Why didn’t I do more to educate myself? I
called my youngest aunt first to find out what medication
was needed—she and my uncle were devastated. I called
my mother; she called her mother and oldest sister. Three
generations of carriers and we all felt the horrible weight of
guilt. Because I didn’t know my carrier status and because
I struggled during delivery, my son resided in the NICU for
eleven days on a 24-hour drip of factor therapy.
Carrier’s Guilt
When you find out you’re a carrier and realize you’re
essentially responsible for your child’s rare diagnosis,
mothers tend to feel distress. Everything changes from
that moment forward. What really lies ahead? What kind
of life will your sons have? Will your daughters have to
go through this ordeal all over again? For some, even the
decision to expand your family is agonizingly scrutinized for
months and maybe even years. Is it the right choice for you
and your family? How will you manage this new world of
hemophilia on top of your daily challenges?
It’s okay to have all the feelings we experience as carrier
moms. The entire process from grieving to acceptance to
proactively tackling hemophilia head on has allowed me to
grow in a manner I would have never anticipated otherwise.
What we have to remember is that today, we have access
to a wealth of knowledge and medical research that
was not otherwise available to others in the hemophilia
community only thirty years ago. The advancements of
factor medications, the options for prophylactic treatment,
the flexibility to infuse at home, the medical support from
our Hemophilia Chapters and Associations, and even the
emotional support from online communities devoted
to families managing bleeding disorders. Hemophilia
and other bleeding disorders are regarded in much
different standings than they were three decades ago.
This condition is not a death sentence and no longer the
taboo it was in the 1980s. Families today educate, advocate
for, and support one another throughout this journey.
The resources at our disposal are incredible luxuries
that my aunts and cousins were not fortunate enough to
experience in childhood.
The old cliché that “knowledge is power” is undeniably true.
Additionally, being proactive is incredibly conducive to the
positive experiences you have on your personal journey.
If at any point in your family’s history hemophilia has been
suspected, get yourself tested and confirm your carrier
status. If you’re a carrier with young daughters, educate
them well and find out their status early. Research has
uncovered that carriers are often symptomatic or can
become symptomatic as we age through adulthood—an
experience my mother is going through now, but her
sisters fortunately are not. The more knowledge you have
of your family, the better you can plan for basic milestones
such as tooth extractions, pregnancies, surgeries, and
medical emergencies.
Conclusion
I am here to say that even with all that my husband and I
have experienced in our son Aloysius’ birth and diagnosis,
we couldn’t be happier with our journey. Aloysius is now
just over three years old. He is a brilliant little big guy
on prophylaxis. Through his cooperation and our sheer
determination, my husband and I have learned to infuse at
home. Aloysius is very active, loves swimming, swings at the
park, jumping off the living room sofa, listening to music,
and eating pizza and chocolate. He’ll be starting pre-k in
September, so my anxieties kick in as we enter this new
unknown phase of our journey, but a big part of me knows
he’ll be just fine as long as we continue to do our part.
I certainly understand the guilt that comes with being a
carrier, but we have learned everything we could from our
past mistakes and continue to keep abreast on emerging
research regarding the future of hemophilia. My family will
continue to learn and adapt; please know that yours
will, too.
10 11

SPOTLIGHT ARTICLE
Women Through the Generations
BY JEANETTE CESTA
When my daughter wrote this article, it truly brought home to me the
power of women with bleeding disorders—sharing stories and advice—
and the connection we share. It is a connection that spans generations of
women, strong and wise, born of common struggles and challenges. This
connection nurtures us as we learn how to live a vibrant life while having a
bleeding disorder.
“To say I was reluctant to attend the educational weekend symposium with my family is an understatement.
I didn’t understand why I had to spend a weekend hearing lectures about Von Willebrand Disease (VWD), the
bleeding disorder my mom, siblings, and I suffer from, when I already knew everything about it. VWD is a
genetic disorder that, in short, causes very slow clotting. This symptom can turn a simple surgery into a major
procedure, or a harmless injury into a life-threatening situation. Thankfully, I’ve had a very healthy childhood
so it never really affected me personally. Nevertheless, my parents have been hyper vigilant, ensuring we
understand the disorder and even teaching us how to treat ourselves (infusing VWD replacement factor) if
anything were to happen. Evidently, their next brilliant plan was to force us to go to the Florida Hemophilia
Association’s weekend retreat.
After the first of day of monotonous talks, my negative attitude was solidified. However, on the second day,
my mom and I went to a women’s discussion session. As I listened to women share their personal experiences,
my attitude was radically changed. I was shocked to hear story after story about women living the majority of
their lives undiagnosed, without having treatment or even a name for their unexplainable symptoms. By the
end of the session, I realized how lucky I was to have been diagnosed at birth and always have easy access to
treatment. I was also filled with questions, and naturally I turned to my mom first.
I was appalled by what she told me. I learned that due to the pervasive male stigma attached to bleeding
disorders, many women struggle to get diagnosed. Even with a diagnosis, however, getting treatment is an uphill
battle because of a general lack of education on women with bleeding disorders in the medical community. I
learned about my parents’ constant battling with insurance companies and the financial struggles we faced
because of the cost of treatment and health insurance. I even learned that my grandmother, whom I never got
to meet, died from complications arising from VWD that might have been prevented if she had been diagnosed
and received proper care. It was unsettling to realize I had lived with this disorder my whole life and never
knew all these disturbing facts. I’m ashamed to say it was because I had been too apathetic to listen. I had
subconsciously since it didn’t affect me, it didn’t matter, and I’m thankful my eyes were opened.
Shortly after returning home, I was struck in the jaw with a basketball. I could feel that this caused a bleed in
my jaw joint, but my mom and I had to visit several doctors before my suspicion was confirmed. This showed
me firsthand how uneducated many doctors are about VWD and how difficult it can be to get injuries that look
minor on the outside taken seriously.
These two experiences combined were very eye-opening for me. Since then I have become more active in our
chapter of the Florida Hemophilia Association. My mom works as a bleeding disorder educator, traveling the
country raising awareness for bleeding disorders in women. Now I have taken on more personal responsibility
for my VWD. When the time comes for me to be fully responsible for my healthcare, I know I will turn to the
many resources available in our community and to the many women who share in these struggles.”
–Johnna, Age 16
It is well established that women with bleeding disorders have often faced
marginalization and lack of validation of their symptoms and experiences.
Sometimes this leaves us with feelings of isolation and hopelessness. But
we can find renewed energy with each other. To know we are not alone,
and that other women have successfully found their path through the
barriers that sometimes block their way to optimal medical care, can be the
spark for our own journey.
When I consider the lack of education and appropriate care that existed
when my mother lived, it’s not surprising that she didn’t even receive
her diagnosis of Von Willebrand Disease until the last years of her life.
When I look at the challenges I faced as a young woman, diagnosed at 22,
navigating my way to better healthcare, I remember feeling overwhelmed
and many times unsupported. But then when I see my children, the young
women my daughters have grown to be, comfortable in understanding
their bleeding disorder, receiving quality medical treatment, and able to
assert for their care, I see how far we have come.
There are now many resources to aid us in our quest for our best quality
of life. Women with bleeding disorders groups exist all over The country, websites are full of information, national
organizations give us a voice, and research is seeking answers for us. Each year new initiatives explore ways to enrich
our lives.
It is now up to each of us, individually, to grow this community of women. Educate yourself, investigate the resources,
spend time with other women at community events, and spread the wisdom that you have within you. By doing this we
will ensure the generations to come continue to experience a wonderful, quality life.
Some resources to explore:
1. National Hemophilia Foundation—national bleeding
disorder support organization: www.hemophilia.org
2. NYC Hemophilia Chapter—local chapter of NHF:
www.NYHemophilia.org
3. Hemophilia Federation of America—national bleeding
disorder support organization: www.hemophiliafed.org
4. Search for Hemophilia Treatment Center: www2a.
cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.
asp#treatmentCenters
5. MASAC (Medical and Scientific Advisory Council)—
issues recommendations and advisories on treatment,
research and other general health concerns for the
bleeding disorders community: www.hemophilia.
org/Researchers-Healthcare-Providers/Medical-and-
Scientific-Advisory-Council-MASAC
6. Steps for Living—information about bleeding disorders
through different life stages:
stepsforliving.hemophilia.org
7. National Institute of Health clinical trials listing—look
up possible trials on bleeding disorders and related
treatments: clinicaltrials.gov
8. American Thrombosis and Hemostasis Network—
information about data collection in the bleeding
disorder community: athn.org/?q=content/patients
9. Blood Sisterhood app—an app for women with bleeding
disorders: www.sisterhoodapp.com/contact.html
10. Medic Alert Foundation (medical jewelry).
www.medicalert.org
12 13

CAMP LITTLE
OAK & WHY
GIRLS CAMP
BY HOPE WOODCOCK-ROSS
Why a camp for girls with bleeding disorders? Or why do
girl bleeders need their own camp?
In April 2006 three community members formed Camp
Little Oak (CLO) to provide girls the same opportunities
that boys had at a bleeding disorder camp. Camps for boys
have long been recognized for the benefits in helping boys
in understanding their disorder.
Girls bleed different than boys? Not that our total focus at
camp is on periods, but it is something girls have to deal
with for most of their lifetime. Knowing that other girls have
been through “horrible” periods, heavy bleeding and that
you can talk to someone who understands is a true benefit
of our week in the woods.
Living with a bleeding disorder is a lifelong challenge. But it
doesn’t have to be the focus of how you live. By giving girls
a chance to spend time with other girls like themselves,
we help them learn something so very important to any
child with a chronic medical condition—you aren’t alone
in the world.
The experience helps them to develop a better sense of
self, which in turn nurtures the strength of character they
need to deal with their bleeding disorder—as well as the
rest of their lives.
Camp Little Oaks Inc. is run by volunteers from the
bleeding disorders community. Most of our staff members
either have a bleeding disorder, know someone with
a bleeding disorder, or work in the bleeding disorder
community. The CLO Board works year-round to raise
money, recruit volunteers, and generate support for the
camp program.
In Camper’s Words:
“Easy! Girls have a way of understanding and supporting
each other that you don’t get when going to a camp
with mainly boys. Hence why I travel halfway across the
country! With girls being so few and far between in the
bleeding disorder community, though it is getting better,
it’s nice to be able to connect with another female who
may be going through the same things physically and
emotionally that you’re going through.”
-Elizabeth, camper turned counselor
“I only went for one year in high school before college
but it was a great experience. CLO lets everyone feel as
if they are no different than anyone else. With being
diagnosed with a bleeding disorder, people act like
they have to walk around on eggshells with you so you
do not hurt yourself. CLO lets you feel as if you’re not
different. They give you the chance to do things that
you never thought was possible. And you also gain
confidence you may have never had there as well. Never
in a million years did I think I would do a ropes course,
not only because of my disorder but because I’m afraid
of heights. I felt safe at CLO and everyone is there to
encourage you. The experience is amazing and when I
have children old enough/eligible to go this, it would be
the only camp I would trust sending them too! On top
of the great atmosphere and amazing councilors, Hope
is somebody everyone should have a chance to meet,
especially if they have a disorder she can help with!”
“I go because some camps wouldn't take someone with
a bleeding disorder because they don't know how to
handle it or are too scared to. Also it makes you feel
normal and that it's possible to do whatever you want
to do.”
-Tess, camper, age 19
“It's been years since I’ve been at camp. But I will say
it was just a great opportunity and it was always fun.
There was NEVER a dull moment!! And even though it's
an all-female’s hemophilia camp, we were not treated
like glass, we were pushed to our limits. And for me, I
always felt that at CLO I just had one big family of blood
sisters that I will never forget any of them”
-Maria, camper, age 21
“Getting the opportunity to go to Camp Little Oaks was
not only a fun experience but an educational one at
that. Being a carrier in a family full of bleeders, I did
not fully understand VWD or hemophilia. It was not
until I became a camper at CLO that people helped me
understand what VWD and hemophilia is. At camp,
no matter if you are a carrier or you have hemophilia
or VWD, you never feel singled out or weird, everyone
supports one another. It was like being in one big, crazy,
fun, and loving family! You are immersed in the most
wonderful atmosphere! I didn't just learn more about
my bleeding disorder at camp, I also made lifelong
friends who support me and others still today!”
-Myndee, camper, age 24
-Rebecca, camper turned counselor, age 23
14 15

PREPPING
FOR COLLEGE
BY SHARI BENDER
Your Baby Is Heading to
College, Congrats!
Sending your child off to college is a big step for anyone.
When that same child has a bleeding disorder, going off to
college just got a lot more complicated than a trip to Bed
Bath and Beyond.
Apply for Scholarships
There are numerous scholarship opportunities available
for members of the bleeding disorder community. Most
scholarships range from $150–$7,000 and some are
renewable. There are general scholarships, scholarships
for specific bleeding disorders, and some scholarships
available to siblings. Visit www.hemophilia.org/Community-
Resources/Scholarships to get started. And remember,
even if your child isn’t awarded a scholarship for freshman
year, they can often reapply as a sophomore.
students do have access to alcohol, and many do drink.
One young man with hemophilia, in a drunken state,
decided he would join his fraternity brothers in sliding
down a hill on a cafeteria tray. It was a lot of fun until this
young man careened straight into a tree and was sent the
hospital, bleeding and sustaining lifelong complications.
Alcohol impairs judgment. Make sure your student protects
themselves by prophylactically infusing before a big night
out. Also, discuss a plan with your student for their new
college treatment schedule; they may need to infuse more
or less often than they did in high school.
local hemophilia treatment center so they can learn to
infuse themselves if needed. You’d be surprised about
how many ER nurses and docs are unfamiliar with factor
product, so having product on-hand and knowing how to
mix can save a lot of time in the event of an emergency.
Seasoned self-infusers can also benefit from fine tuning
their technique and trying new veins.
Seem like a lot? It is! But with advance preparation your
child's transition to college will be easier for both of you.
Cheers to a successful and healthy four years!
THEN
NOW
College Search Process
Your child's life will be much easier and healthier if the
schools they apply to and ultimately choose are within
reasonable proximity to a hemophilia treatment center or
hospital that can adequately manage bleeding disorders
and potential complications. Once the college has been
selected, call and make an appointment with the HTC or
local hematologist to establish the student as a patient.
If you are not able to visit campus before the start of
freshman year, be sure to make a call and send an email
introducing your student and make an appointment soon
after their arrival on campus.
Get Plugged into the College Office
of Disabilities
Establish a relationship with the Office of Disabilities. If
possible, arrange an in-person meeting before the start of
school. Otherwise, coordinate a call in advance of arrival
on campus and schedule a meeting right after school
starts. These departments are well-versed in the support
system of the school. If your child needs housing on the
first floor or a building with an elevator, the staff at the
Office of Disabilities will be your best advocates for any
special accommodations your student may require. For
example, how does your child store factor? Is a small fridge
in the dorm room possible or does it need to be stored in
a common refrigerator? All of these questions need to be
answered and sorted out before move-in day. In addition,
it is helpful to have safeguards in place with professors
in case hemophilia complications cause your student to
miss class assignments. Again, the Office of Disabilities can
usually ease this burden.
Infuse Before You Booze
It is really important for parents to acknowledge that
despite a 21-year-old legal drinking age, nearly all college
Other Helpful Tips:
• Strongly encourage your student to wear a medic alert.
God forbid your child should find themselves hurt and
unable to communicate, first responders are trained
to locate a medic alert bracelet. Your student's medic
alert should name the bleeding disorder and be clear
with treatment (example, severe hemophilia A, treat with
recombinant Factor 8). There are a lot of new cool styles
of medic alert for a practical and stylish going-away gift.
• Think about how disclosure of their bleeding disorder fits
into the college transition. Do they tell their roommate?
Role play with your child if they need help finding the
right words to explain their condition.
• Are you keeping your child on your health plan or are
they going to be insured through their college health
plan? Check with each insurance option to see which
offers the most comprehensive coverage.
• Make sure your bleeder knows how to order their factor
product and ancillary supplies.
• If your child’s bleeding disorder is mild or moderate
and they haven’t self-infused, consider contacting your
Shari Bender, founding member of NYCHC
and its first President, currently serves
an advisory role within the Chapter. Her
daughter Rose has hemophilia A and is a
sophomore at Yale University.
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LA MUJER
PERFECTA
VIAJE A LA
INFUSIÓN
POR JULIA MARTIN ALVAREZ
POR ALEJANDRO ROBAU-SÁNCHEZ
Era perfecta.
No comía dulces, se mataba en el gym y hasta tenía una
relación maravillosa con todos sus vecinos. Tenía un
marido perfecto, que la quería y respetaba y vivían en una
ciudad perfecta y segura. Hace unos años fueron padres
de un bebé perfecto, bello, sano y alegre. A los pocos
meses de vida, a su bebé le salió un tremendo hematoma
en el pecho y descubrieron que tenía un desorden de
coagulación. Ops! Tras superar el duelo, como su marido
y ella eran, además de perfectos, muy inteligentes, se
informaron, se asesoraron, asociaron a la organización de
pacientes y siguieron adelante con sus perfectas vidas.
Ella que era muy contenida, y a quien no le gustaba
ni llorar ni reírse demasiado para que no le salieran
arrugas, se dió cuenta de que, a veces, no demasiadas,
se encontraba triste y algo nerviosa…Las visitas al ER se
habían vuelto casi una rutina. Y, como además de perfecta,
inteligente y contenida, era muy abnegada, algunas veces,
ni siquiera le decía a su marido que estaban en el ER hasta
que él no llegaba a casa del trabajo. Por qué molestarle
si ya podía hacerse ella cargo? Ella era la madre y era
su responsabilidad que todo siguiera su curso en sus
perfectas vidas.
Pero, sí, en ciertas ocasiones, estaba algo irascible. Sólo
un poco. Y en esos casos, la más mínima contrariedad,
hacía que se pusiera de un humor TERRIBLE y chillara
a su marido como una loca... Con una voz perfecta, eso
sí, pero que tronaba como una bomba en la sala de
estar. Y su marido no entendía nada...Y sus maravillosos
vecinos la preguntaban al día siguiente si algo iba mal.
Algunos incluso la lanzaban miradas acusadoras al ver los
hematomas del niño.
Pero, salvo esas pequeñas cosas, todo estaba bien!
Tras tener que quitarle el port-a-cath, los médicos
les aconsejaron empezar el tratamiento en casa. Les
preguntaron si se sentían preparados y ella respondió por
los dos: “por supuesto!”. Ella podía. Porque era perfecta,
inteligente, contenida, abnegada y, además: decidida.
Lo que sucedió es que ponerle una inyección a un niño
de 2 años resultó ser ligeramente más complicado de lo
esperado y ella comenzó a perder el control. Y ya nada era
perfecto. A veces se irritaba, otras se desesperaba, otras
lloraba…Y un día lloró tanto que sus lágrimas manaban a
chorro de sus ojos y sintió que la tensión la paralizaba y no
podía moverse, ni siquiera podía hablar. Sólo llorar. Lloró y
lloró y pensó que nada en el mundo merecía la pena tantas
lágrimas. Y decidió aceptar las cosas como eran.
A día de hoy su matrimonio no es perfecto, pero unidos
se enfrentan a las dificultades apoyándose el uno en el
otro. Juntos, al mismo nivel. Su hijo, crece y aprende de sus
errores, y eso le hace no perfecto, pero sí maravilloso. Ella
come dulces, bebe cerveza y ronca por las noches. Y no,
no es perfecta: está llena de dudas, de arrugas, y de canas.
Se equivoca, a veces le chilla a su hijo, otras se enfada con
su marido y otras se entristece sin razón aparente. Pero
en otras ocasiones, esa familia imperfecta molesta a sus
vecinos, porque pone la música a todo volumen y bailan y
se ríen y se abrazan también sin razón aparente. Porque
no son perfectos. Porque la vida no es perfecta. Porque
merece la pena vivirla.
Vivimos en un mundo lleno de estereotipos de mujeres
bellas, triunfadoras, madres maravillosas que NUNCA
pierden el control; esposas sumisas e increiblemente
atractivas, que siempre tienen respuesta y soluciones para
todo y para todos. Estos roles someten a las mujeres a una
presión desmesurada. Si a esa presión social le añadimos
la presión que supone criar a un niño con un desorden
de coagulación, estamos sembrando a esas madres de
bombas emocionales.
“Ahora soy yo la que te salvo”
Mi hijo Alec apenas cumplía diez meses de edad cuando
le diagnosticaron hemofilia severa tipo B. La noticia,
inesperada, nos aplastó con la fuerza de lo desconocido.
Los hematomas que tenía el niño en el abdómen no
eran entonces por los blandos golpes que se pegaba
en el andador, en sus primeros esfuerzos por aprender
a caminar.
Tenían que ver con la hemofilia, esa rara condición médica,
hereditaria en muchas de las ocasiones, una caprichosa
mutación en el caso de mi hijo. Y pronto nos llegó la
confirmación de la manera más rotunda: una inflamación
en una de sus manitas, por lo cual tuvo que ser internado
en un hospital, Long Island Jewish.
A raíz de ese evento le fue indicada la infusión como
profilaxis para evitar futuros sangramientos. Dos veces
por semana.
El tratamiento profiláctico representó ciertamente una
mejora enorme de la calidad de vida de Alec. También
resultó en la necesidad de estar siempre cerca de una
clínica u hospital donde pudiéramos llevar al niño a
recibir la infusión, ya fuera por la profilaxis o en caso de
una emergencia.
Para nosotros también todo se hizo más problemático.
Había que manejar 45 minutos hasta la clínica donde le
administraban las inyecciones y, por ese tiempo, teníamos
un solo auto, lo que implicaba tener que hacer arreglos
engorrosos para poder, yo ir a trabajar, y mi esposa llevar a
nuestro hijo a la clínica.
Además, salir de viaje parecía casi impensable, y nuestra
vida familiar se tornó cada vez más dependiente de la
rutina de la infusión.
Hasta que mi esposa Yanet decidió que la solución era que
ella aprendiera a inyectar a nuestro hijo.
El personal de la Clínica de Hemofilia del hospital Long
Island Jewish entrenó a mi esposa, que no tenía ningun
antecedente profesional médico o de enfermería. Y así fue
que en unos meses, ganada experiencia y confianza en sí
misma, un sábado en la mañana, en la sala de nuestra casa,
Yanet intentó administrar la infusión a nuestro hijo Alec.
Ganamos con ello independencia, pero sobre todo mayor
Pero no, todo era perfecto! Nada iba mal. Es cierto que
seguridad. Como le dijera mi esposa Yanet a mi hijo Alec
a su hijo le fue negada plaza en 15 escuelas debido a
aquella primera vez, en la sala de nuestra casa, cuando
su hemofilia. Que algunos familiares la culpaban por la
felices y temblorosos logramos la primera infusión:
enfermedad del niño. Es cierto que su casa estaba tapizada
en espuma. También es cierto que el niño desarrolló
inhibidor, hubo que ponerle un port-a-cath que se infectó y Mi consejo:
“Ya no tengo que llamar al 911: ahora
los llevó a la sala de operaciones en varias ocasiones… Únase al club de las mujeres defectuosas y sea feliz!
soy yo la que te salvo”
18 19
Y lo logró.
Desde entonces, hace ya casi siete años, mi hijo recibe
el medicamento en nuestra casa en Long Island, o en el
lugar donde estemos, ya sea en los Adirondacks, en Miami,
o en casa de sus abuelos en Cuba. Mi esposa garantiza que
así sea.

JOIN US FOR A DAY OF
FUN & COMMUNITY
AT THE
12TH NYC
HEMOPHILIA WALK
SUNDAY, JUNE 4
RIVERSIDE PARK
97TH STREET & RIVERSIDE
HEMOPHILIA HURTS!
A Sibling’s Perspective
BY FARAH PAVRI
Hemophilia hurts both physically and emotionally!! Physically it hurts the one that has the disorder, and emotionally
it hurts the affected person and everyone else around them. Everyone is affected emotionally on different levels. As
a sibling, the worst thing for me is that I can’t fight my brother back when we get into a fight :-|. All jokes aside, I have
always wondered what life with hemophilia would be like. I’ve seen my brother suffering since he was a toddler. Ankle and
elbow bleeds were like the common cold or a cough any child at that age would have. However, for the past 3 years, my
brother’s right knee has become his target joint. Sometimes when his knee bleeds, it can get as big as a cantaloupe. All
rivalry is kept aside when I see my brother crying from the pain of his bleeds.
Being a sibling of someone with hemophilia has made me
curious about the topic. I attend seminars and camps with
him, and am always trying to get more information. Because
you never know when it might come in handy. I know I can
never understand the pain my brother goes through, but I can
understand how bad it can be. Whenever my brother can’t play
basketball or walk because his knee hurts, I don’t ride my bike
or play outside because I don’t want him to feel bad or left out.
I wouldn’t want to join a sport that he couldn’t participate in. I’d
rather wait to play with him when he feels better.
Hemophilia or not, I love my brother and wouldn’t trade him
for anything in the world! He’s my little baby :-).
Looking for a new, fresh
perspective on living
with hemophilia?
CREATE YOUR
WALK TEAM TODAY!
http://hemophiliawalk.donordrive.com/
event/newyorkcity
From,
Farah Pavri, Age 14
Introducing your
all NEW guide to
Living With
Hemophilia
See What’s New at
www.LivingWithHemophilia.com
© Bayer. All rights reserved. BAYER,
the Bayer Cross and Living With
Hemophilia are registered trademarks
of Bayer. 1/17. PP-775-US-0526

JUNE 2016 NYC Hemophilia Walk
AUG Teen Rock Climbing Trip
Back to School Event
NOV 2016 Gala
Education Day
VWD River Cruise
OCT Step It Up: Latino
JAN Salidita de las Mamás
Health Program
A few of our awesome events in 2016
Patrick Lynch:
This episode’s expert is Dr. Arash Mahajerin, who is a
pediatric hematologist at the Children’s Hospital of Orange
County California and an assistant clinical professor at the
University of California, Irvine. This question comes from
a blood sister living in Australia, actually, and her question
is how as a clinician do you assist young patients and their
families and help them prepare for the onset of a woman’s
menstrual cycle? She says, “I’ve noticed a lot of uncertainty
from mums, especially in groups lately around how to
prepare their daughters.” I don’t know how many female
bleeders you treat, but curious to hear your answer to
that question.
Arash Mahajerin:
We certainly have plenty of women who are carriers, who
do have lower factor aid levels, and of course I think this
could have applicability to other bleeding disorders. For
example, Von Willebrand’s Disease would be a very good
example for where this would be very common. I think the
first thing that’s very helpful and what we counsel people
is that as a general rule, and of course there are always
exceptions, how severe is it initially tends to be somewhat
familial that often times we can see patterns emerge in
different families. Now that being said, someone who may
have a bleeding disorder might skew the pattern a bit and
might have bleeding a little bit early, and then on the flip
side we sometimes see people who may have anatomic
issues or other types of problems that make as onset
of bleeding much later. We can also see that in different
hormonal issues as well or endocrine issues.
Emphasizing to young women and girls that this is
something that women go through and they will become
experts in and to get used to that it might be a bit drawing
and discomforting at first, but certainly trying to demystify it
as much as possible and normalize as much as possible is
really critical.
And then of course having some action steps for whether
it will occur at home versus whether the child were at
school or maybe out-of-the-home environment and how to
approach it. And then keeping good communication with
their hematologist, OB/Gyn, or doctor so that medications
are ready and that it’s been discussed ahead of time and
it’s known, well here’s our plan. Here’s what we could
potentially order or prescribe [00:12:00] and here’s how we
can monitor and follow up to make sure that the bleeding
is slowing down, that the child is tolerating it okay and is
dealing with it well. And of course in the event the bleeding
is severe, making sure that hemoglobin is being monitored
and that it’s not causing any acute anemia.
I think those would be good steps to really prepare and
hopefully deal with it as efficiently and easily as possible.
Ask the Expert is a series of podcasts featuring listener
submitted questions answered by a hemophilia treatment
center clinician or other healthcare expert of interest. Ask
the Expert is hosted by Patrick James Lynch and is part of
the Bloodstream Podcast Network. Subscribe today!
Dr. Arash Mahajerin
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PRSRT STD
U.S. POSTAGE
PAID
Columbus, Ohio
Permit #7536
New York City Hemophilia Chapter
109 West 27th Street
Suite 11b
New York, NY 10001
(212) 382-2974
info@nyhemophilia.org
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