World Hemophilia Day

Living as a Refugee


World Hemophilia Day was celebrated last week around the world. While everyone was wearing red, to symbolize the blood and treatment we have in common, I wore white, to symbolize those without treatment. After all, the logo of the World Federation of Hemophilia is a red figure with their arms around a white figure. The haves and the have-nots.

We ship donated factor to the tune of over $7 million per year to developing countries. Once in a while we get an unusual request, such as this one, from a refugee.

“I am a Syrian refugee whose son is in dire need of a particular medicine which is not consistently available here in Jordan and is extremely expensive. I am a Syrian national, born in 1974, married with four children. I was forced to leave my country after the war broke out in my hometown Darayya in Western Gouta of Damascus, when the regime forces broke into the town. Then, the local people were forced to leave due to the bad shelling by the regime.

“My house was damaged after being hit by many shells and was not able to live elsewhere for a long time because I was subject to detention by the regime’s checkpoints. Therefore, I was forced to leave my job as a teacher and became jobless. Then, I had no other choice but move to Jordan.

“The problem is that I have a 13-year-old son who suffers from hemophilia B, which is a blood clotting disorder, so that when my son gets injured or hit, he bleeds to death unless he is given factor IX medicine. The bleeding specific to his condition is generally internal, inside the joints. For this reason, I was forced to leave Syria because the internal bleeding could likely be fatal, especially due to the difficulty in reaching hospitals in Syrian wartime conditions.

“I have been a refugee in Jordan since March 31, 2013. Although therapy expenses are incurred by the UNHCR, the medicine sometimes is missing all over Jordan and not sold in pharmacies there. This medicine is very expensive so that individuals cannot afford it. The alternative medicine is plasma. Yet, it is very dangerous if patients take large doses of it.

“When my son gets sick, he must go to the children’s ward because it is not possible for Syrians to be treated in the hemophilia B ward in the Jordanian hospitals. This means that my son must stay with his mother in hospital for one day at least each time he is sick.

“The only hospital that has the medicine is way far from our residence, which disunites my family. I do not know where to leave my other kids when their mother is absent; the youngest kid is only 3 years old. This prevents me sometimes from taking my son to hospital when his bleeding is not heavy. This leads to harming his joints when bleeding continues and makes them stiffen and therefore, he will lose his ability to move especially that his left knee’s joint is greatly damaged due to continuous bleeding. It is known that it is unnecessary for the patients who suffer from hemophilia B to stay in hospital because they only take the medicine and return back home.

“Sometimes my son might bleed outside regular operating hours. This means that we might not get the medicine on time. This causes a handicap to my son’s joints and paralyzes his movement as doctors has warned from such results many times.

“I extend my sincere thanks to you for your selfless humanitarian effort to help the refugees of our country. I would like to thank all those, governments, individuals and non-governmental organizations, cooperating to support the vulnerable Syrian people.”

This is a gripping account of pain, love and survival. Fortunately, we were able to send a donation of factor, and will continue to help this family, and hundreds more, through Project SHARE. We are grateful to our supporters, and to those who donate factor to us each day.

Learn about Project SHARE here. Call us at 978-821-6197 or email us at if you have factor to donate. Thank you for caring and sharing!

Celebrating World Hemophilia Day

Today is World Hemophilia Day, celebrated by thousands of people with hemophilia around the world. We’re a small community: only an estimated 400,000 worldwide. Of this, only 25% are estimated to have adequate treatment. The majority with hemophilia have little to no access to medical care or factor, the blood clotting medicine that stops bleeding.

Today is also the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who moved to Canada to seek better access to treatment and financial coverage for that expensive treatment. It was there he founded the WFH over 50 years ago. Today the WFH represents a staggering 120 countries as members. With membership, these countries receive NGO training, medical help, donations of factor and educational materials.

This week I am traveling to one of WFH’s member countries, Uganda. This is my first time there, and I go to invite the country to join our child sponsorship program Save One Life. Save One Life has over 1,200 children and young adults with bleeding disorders enrolled and has over 400 sponsors who provide financial support. Nurse Kate Khair, from the Great Ormond Street Hospital in London, has been to Uganda several times to help diagnose children with hemophilia. She wrote to me about the challenges of working in a country where so many are undiagnosed and live in rural areas:

Pictures from Barbados’s first World
Hemophilia Day!

“I met a family of 4 boys who have a small holding about a 5 hour drive from Kampala (the capital). When we were there, mum was 8 months pregnant, the boys all have terrible joints and told us about having to go to the river to get water – imagine that with a big knee bleed. There was one sister; she and the dad were essentially holding the family together. The boys’ wish was to be able to go to school, but it was too far to walk. I’m sure this is a familiar story for you, but my 2 team members and I have been profoundly affected by them. Save One Life makes, I know, massive impacts on families like these.” 

Indeed it does! I am especially encouraged today by the efforts of a mother of a child with hemophilia in Barbados, Erica Worrell, who has created the first hemophilia society there. Two years ago I traveled to Barbados to try to motivate the patients to start a national patient organization. The interest was there, the needs are great; we met quite a few families and planted some seeds of advocacy. All it took at last was one brave mother to take the first steps. Today, Barbados celebrated World Hemophilia Day for the first time, and has joined our global community. This is what the day is all about, celebrating the efforts of the many who work so hard to bring support and medical help to those in need, while bringing attention to the public about this rare disorder. Together, we can do it, and fulfill a dream Frank Schnabel had so long ago.

April 17: World Hemophilia Day!

Friday was World Hemophilia Day, celebrated in honor of the birth date of Frank Schnabel, the founder of the World Federation of Hemophilia, based in Montreal, Canada.

All across the globe hemophilia organizations arranged to have famous landmarks lit up in red at night in solidarity. As well, many people in various companies and nonprofits wore red, as a sign of solidarity.

I was asked to speak to employees at the new Novo Nordisk plant in Lebanon, New Hampshire, where  the new product Novoeight, is being made. It was a lovely two hour ride from my home in Massachusetts. I had a quick tour of the new plant by none other than Scott Evangelos, a process scientist, but also a friend for 30 years, who ironically just happens to have been hired last September by Novo Nordisk. Not only is he a family friend, but his wife Sara, has been my editor for 20 years. All the things you read from us, from books to newsletters, have been vastly improved by her gifted skills in editing.

WHD in Tunisia

I spoke about hemophilia, its complication, treatment and of course inhibitors, as Novo Nordisk makes an inhibitor drug, Novo Seven RT. Half of my talk was dedicated to the 75% of our community which lacks treatment, and I shared slides of some of the families I have met on my journeys.

WHD in Pakistan
WHD in Seattle!

Unlike everyone there, who all wore read, I wore white, to show my solidarity for those who do not get treatment. Due to company policy, I was unable to take photos! It was a lovely event, and I hope the employees have a better sense of our community, and their new role in it. It was a pleasure to tell them “Welcome to our community,” for they belong as well as the patients.

Thanks to Sue Clark for arranging this great event!

Great Book I am Reading
Stiff: The Curious Lives of Human Cadavers [Kindle]
by Mary Roach

Mary Roach has done it again. Taken an offbeat topic–what happens to the human body after it dies?–and at once educates and entertains. From the ancient Egyptians, to medical research, to cosmetic surgery to crash tests, she shows us all the ways we use corpses. Roach interviews and gets the facts and stories, but also inserts herself in the story and her thoughts, which are witty and hysterical. She is a gifted writer with tons of curiosity. The human corpse has contributed much to our understanding of the body and world, making our lives better and safer. Read this to learn, to grow in appreciation and for a good laugh! Four/five stars.

Speak Out, Create Change!

Kenyatta National Hospital

about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

take aways from Dr. Kibet:

Kenyans we have every right to be provided for by things that affect us with
must take charge of our own destiny.
will make us strong.
with one voice!
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.

is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

World Hemophilia Day

Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.

We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.

Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.

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