World Hemophilia Day

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

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.

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!

World Hemophilia Day in Kenya

Laurie Kelley April 17, 2009

Jambo!

The evening air in Nairobi is cool and crisp, and a chorus of frogs are singing as I walk back to my room, traversing a beautiful stone walkway through the lush hotel courtyard. One frog sounds like a frantic woodpecker on a hollow log, while others sound like little cell phone alarms. While I walk, I relfect on a remarkable day; World Hemophilia Day, in Kenya.

I arrived just 24 hours ago, and already feel like so much has happened. After 19 hours in transit, I arrived in Nairobi, Kanya’s capital, to be greeted by Maureen Nyangwara, mother of a child with hemophilia, her husband Sitawa, and two board members of the Jose Memorial Hemophilia Society, a new patient group. Maureen and I hugged like long separated sisters: we have kept in constant contact for almost two years, since her little Joseph died while in intensive care from nasal bleeding. This tragic loss was a catalyst for Maureen to take action, to try to ensure that no child die needlessly from bleeding in Kenya. She formed her nonprofit as a primary place for parents to feel heard, empowered and home. And today Kenya celebrated its first World Hemophilia Day!

The meeting took place at MP Shah Hospital, a private hospital that welcomes hemophilia patients. After touring the hospital, we arrived at the conference room, which began to fill with patients and staff. Soon there were about 60 people in attendance. Today would be the official launch of the JMHS. There were moving speeches by the MP Shah CEO and the Ministry of Health representative. Dr. Dave, the MP Shah’s hematologist and medical advisory board member, pledged to continue support to the patients and families. I spoke about the need for action by the parents: one or two families cannot carry the work that needs to be done by all. Though Maureen and I both founded our organizations after reaching a point of no return, I stressed that other families do not have to wait until they are in a crisis or pain to come to the Society and ask for hep or to offer help–come now! The Society needs their help and welcomes their ideas. I shared photos and stories from around the world, about how other countries with far less than Kenya successfully accomplished goals and improved care. Often, all it takes is one dedicated doctor and one dedicated parent or patient to move mountains.

Maureen then spoke about how Jose’s death changed her life, and how she will now work to bring better care to all. James , a spry 43 year old, spoke eloquently and passionately about what people with hemophilia can do–the emphasis of the day was Yes we can!

Later we visited the MP Shah hematology ward, where a beautiful new plaque proclaimed the inauguration. I was shocked and honored to find my name on the plague. I was then offered scissors to cut the ribbon to the new HTC center! And while we donate factor to Kenya from time to time, it’s the Kenyans who have done all the work, especially today. The day belonged to them, a celebration of loss, hope, and a compelling future when there will be factor for all. Not a bad start to this journey!

Celebrations and Struggles

Laurie Kelley April 20, 2008

April 17 is World Hemophilia Day, which was celebrated worldwide this past week. It’s a great chance for hemophilia nonprofits to garner public attention and educate about the disorder. This day was chosen as it is the birthday of the founder, Frank Schnabel, who is commonly refered to as Canadian, because the World Federation of Hemophilia is located in Montreal, but who in fact was American! Before we get all proud of that fact, he moved to Canada to get affordable health care. It’s taken his organization, the WFH, decades to move from a family run nonprofit to a more professional, world class nonprofit, but it has done so! This should give hope to the many struggling hemophilia nonprofits in the world.

Speaking of struggling, the Boston Marathon, also world class, takes place Monday, April 21, not too far from me. I had the pleasure of dining Saturday evening with Steve Petty, a Bayer rep from Utah, who shares my passion for adventure sports and the great outdoors, although Steve lives it to an extent I do not. He is in town to run the Marathon! I thought we would have a nice 90 minute dinner, but we enjoyed over three hours chatting about everything from extreme running, to religion, to life’s mission and purpose, to children (we each have three), to hemophilia in the developing world. Steve would like to come with us sometime on one of our missions overseas, most likely for one of our camps. Steve is also a volunteer Search and Rescue ranger in Utah… pretty amazing! He also volunteers a lot for the hemophilia camps, leading young men with hemophilia to do things they didn’t think possible, like rafting, kayaking and rock climbing. The most amazing, jaw-dropping thing I heard all week was that he beat Dean Karnazes, the self-proclaimed “Ultramarathon Man,” in a race!! (Check out the book by the same title, which is fascinating!) Good luck, Steve!

We lost one race today: Gary Yanga of the Philippines, a beautiful young man with hemophilia and a severe GI bleed, died yesterday. We had been trying hard to keep him going with donations of factor. It wasn’t enough. Life is so harsh in these countries, despite the best intentions and skills of his caring doctors, and volunteers, like Father Don Kill, and our program. We offer our condolences to his family over this loss, and it will spur us to continue to work harder for those who still need us. Factor donations are tight, and there is much less to give. We are grateful for any donations, and for those who do pull through, and for those patients whose lives are made a little easier from these donations.

Great Book I Read: Shackleton’s Way by Margot Morrell. If you like reading about extreme adventure, like I do, you will love this book! The story of Sir Ernest Shackleton, one of history’s greatest polar explorer, is world famous and as riveting today as in 1914, when the story unfolds. His Imperial TransAntarctic journey was to have him be the first to traverse the entire Antarctic on foot. But things didn’t work out that way. What happens is a tale of survival and extraordinary leadership under the worst conditions on earth that seems unbelievable: the ship encased in ice and sinking, leaving 27 men stranded; striking out in three life boats for a week; landing on remote, inhospitable Elephant Island; then, the greatest boat journey in history, Shackleton and two other men travel 800 miles in the open, frigid sea to another island, and then stagger miles on foot to finally approach a whaling station, and then organize a rescue for the stranded men on Elephant Island. Morrell tells this tale of Shackleton’s remarkable leadership in business terms: how you can apply Shackleton’s philosophy and revolutionary leadership to your business. This story can make you a better leader in anything you do. Incredible tale that you will never forget! Four stars.

World Hemophilia Day, Lahore

Laurie Kelley April 19, 2007

While today is not officially WHD, the Hemophilia Patients Welfare Society (HPWS) Lahore kindly celebrated it today so we could attend. Lahore is the lush capital city of the Punjab province, and with a population of 10 million, the second largest city in Pakistan. It was a wonderful celebration. Attending were patrons, all the doctors who assist patients with bleeding disorders, the HPWS board, and the Punjab Health Minister Muhammad Iqbal, who pledged to give greater assistance to those suffering with bleeding disorders.

An amazing array of about 150 patients attended: a young woman with VWD who had ovarian cysts and almost died but did not, due to one of Project SHARE’s donations; a young boy with hemophilia in great shape thanks to Ms. Faiza, the HPWS’s wonderful physical therapist; a baby who had a head bleed and sadly developed hydrocephalus and retardation–he was tenderly cradled by his devoted mother; a factor I deficient family whom we have pledged to help. I am happy to say the success stories by far outnumber the tragedies thanks to the dedicated care of the HPWS team. I was especially impressed by how the HPWS is grooming young men and women with hemophilia and VWD to assume leadership of their organization. Not an easy thing to do when there is limited factor and resources.

After the celebration and speeches came lunch, a Q&A, much hugging, smiling, sharing, curiosity. The patients, all Muslims and mostly poor, seemed genuinely touched that we had traveled all the way from the United States.

After the event, Dr. Shahla, who has spearheaded the founding and development of HPWS Lahore, and who herself has VWD, organized a fantastic trip to the Pakistan/India border to witness the “Flag Ceremony,” a ceremonial military show on both sides of the border of India and Pakistan, which are separated by only five feet called “No Man’s Land.” The spectacle was complete with goosestepping Punjabi militia, bugle blowing, shouted commands, flag waving, and tremendously cheering spectators on both sides, who cried “Long Live Hindustan” in reply to “Jiva Jiva Pakistan!” It was thrilling to see the iron gates of both countries open for one hour and for both sides to mirror their moves alternately in a mock display of military might for the crowds.

We thank the HPWS Lahore for inviting us today and allowing us to learn, teach, share and celebrate!

(Photos: World Hemophilia Day, Lahore, Laurie with girl with VWD who was operated on with SHARE donated factor, “Jiva jiva Pakistan!” at the India/Pakistan border.) See more photos from the trip here.