World Hemophilia Day

World Hemophilia Day

Laurie Kelley April 14, 2024

April 17 is the birth day of Frank Schnabel, a California businessman who, over 60 years ago, founded the World Federation of Hemophilia (WFH). All across the globe on April 17, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering. It’s called “World Hemophilia Day.” The theme of this year’s day is “Equitable Access for All.”

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 in-date factor to Project SHARE, and the rest to me! We will find a good home for it overseas. 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.

We’re Giving Away to Celebrate the Day!

Laurie Kelley April 16, 2023

World Hemophilia Day, that is, in rhyming fashion! To celebrate, we are giving away copies of the first children’s storybook on hemophilia, Must You Always be a Boy? I created it over 30 years ago for my child with hemophilia when I realized there were no books for our children. I guess now it’s a “classic”!

Told in rhyming fashion, Dr. Seuss-style, the book contains four humorous and endearing stories for children to help them cope with hemophilia. The first is about over-reactive adults (namely, a well-meaning police officer!). The second, about a very active little boy! The third, about sibling rivalry; and the fourth—and my favorite—about a little monster who is bullied, but comes to realize he is stronger than he thinks.

The books are all based on real people (except for the monsters!).

The book has always been free, but for the first 50 people who email me, there is free shipping in April.

So email me today! And celebrate the day! (It rhymes!). laurie@kelleycom.com.

Wearing White for Hemophilia

Laurie Kelley April 17, 2021

World Hemophilia Day, April 17, is when our community typically wears red, to signify blood, and our unity by blood. I decided years ago to wear white. Why white?

The widely used hemophilia logo features a red and white person standing together in unity. The red represents those with access to factor; the white, those without. And that’s why I wear white. To represent the people I serve most, in developing countries where little to no factor exists, or where donations of factor are not a consistent or sure thing. The logo used to feature a white feature leaning on a red figure, but this was eventually deemed disempowering. I agree!

Around the world, the hemophilia community is encouraged to speak out about hemophilia, to educate the public and to celebrate achievements on this day. Here’s an impressive video of youth in the Philippines; please watch! I visited the Philippines in 2008, when very little was being done to make substantial change. It is now happening, with even a Filipino senator getting involved with World Hemophilia Day! #PassHemophiliaBillNow

https://tinyurl.com/WHD2021YouthVideo

And this Facebook posting was written by a once little boy I met in Pakistan, who is grown now, and has suffered but overcome so much. I’ve been to his home; his family is poor. But he has a future and attitude is everything. Read this amazing post:

Accept Yourself

Zubair Ghafoor

This day is not to highlight your deficiencies, not to remind you about what you are deprived of.
The day is to Celebrate,
Celebrate we were, we are and we will together like a family.
Celebrate that someone is always there to bring you all the way back towards normal life.
The day is to give gratitude,
To all those who put their efforts from minor to major to make our lives less-miserable, either they themselves are haemophiliac or not.
To all those parents that were and are facing from social stigmas and taboos but they are still with us with more power than before.
Thank to yourself that you still believe in you, becoming stronger and having consistency each day.

Last but not the least, we are all come up with our long struggle stories full of difficulties but what matter is that we are still standing all the way with positivity that God who has created us, has planned something more better than this.
Imperfections makes you beautiful, unique from others. So, to All Out There, You Are Not Alone!
If the glass is half empty, look at that it is half full, too.
This is how life goes on…
ACCEPT YOURSELF!

By M Zubair Ghafoor

Happy World Hemophilia Day and let’s keep on, in the memory of those we have lost, for those still living and in need, and for those not yet born.

Speak Out, Create Change!

Laurie Kelley April 20, 2014

Kenyatta National HospitalIt’s
about time. 

As 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.
The 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.

“My 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.”

One 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.

Other take aways from Dr. Kibet: “We Kenyans we have every right to be provided for by things that affect us with hemophilia. We must take charge of our own destiny. Togetherness will make us strong. Speak with one voice! We must lobby the government to support testing and availability of factor. 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.

Speak out… for kids like Emmanuel

Kibet 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.

He 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.
He noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.

This 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.

Emmanuel

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.

Lucy Kago asks a question

Mrs. Mwangi and Stephen

Moline Odwar and Laurie Kelley

John with Laurie Kelley

Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon

Peter, Maureen Miruka, Jovan Odwar

World Hemophilia Day, Big and Small

Laurie Kelley April 19, 2010



World Hemophilia Day was celebrated Saturday around the world in many different ways. The best story I’ve heard so far is how the Romanian Hemophilia Society turned a Bucharest city fountain blood red to raise public awareness of the disorder. I heard from my Romanian friend and partner Adriana that the government then pledged to increase funding to hemophilia 70%. That’s a big way to celebrate!

Likewise, many of the pharmaceutical companies make large donations of product or money to the World Federation of Hemophilia, to commemorate this day.

WHD falls on April 17, the birthday of the founder of the WFH, Frank Schnabel. As the WFH is headquartered in Montreal, many assume Frank was Canadian. He was actually a Californian, and moved to Canada to seek better health care coverage. We should keep that in mind on his birthday, especially here in the US where the health care debate rages on.

There are an estimated 300,000 people with hemophilia who get little or no treatment; most reside in developing countries. Some countries, actually a lot, get no factor at all. But we have small victories, and that too is what WHD is all about. 18-year-old Alfonso, from the Dominican Republic, is someone special to me. I’ve known him for over 10 years, since we started our first camp in the DR in 1999. He was shy, sweet and always smiling, no matter the pain. I used to tower over him, and now he towers over me! Last year, I enjoyed watching him mentor the younger boys as a counselor… and he hobbled about on a leg badly mangled by untreated bleeds.

I was so touched by how helpful he was at camp, and how much joy he brings to all, that I told him I’d get him anything: an iPod, new computer? I know he comes from a family with little means.

“I just want to walk normally,” he confided in Spanish.

His dream is coming true. He had surgery this year, with factor IX donated by a company. The hospital absorbed most of the fees (we helped just a little). He emailed me with extreme thanks for making this wish come true, and with many blessings and exclamation marks!

To me, this is what World Hemophilia Day is all about. Helping the world’s people with hemophilia, in big ways and small, concretely and measurably. I hope his life has been changed by this. I can’t wait to see Alfonso at our 11th Annual Camp, June 5, perhaps walking normally!


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