Developing Countries

Wearing White for Hemophilia

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.

Mountain Madness

The pandemic rages, winter is here; in the Northeast, it’s dark by 5 pm, gloomy, cold. It’s a great time to snuggle up with loved ones after a week of vacation, to watch a movie at night. On social media, people are recommending The Crown, The Last Czars (little bit of hemophilia in there) and even The Ripper.

Here’s a great family movie that I’d recommend: Bombardier Blood.

This is the movie about Chris Bombardier, a young man with hemophilia B, who set out to summit the seven highest mountains on each continent. North America, South America, Asia, Europe, Africa, Australasia and Antarctic: different heights, climates and topographies. Although expensive, time-consuming and death-defying, Chris did it. And Bombardier Blood captured his journey, from training to traveling to hiking. It will make you sit in awe, cry, laugh and be so proud.

And if you look at my flat-screen collection of documentaries, there is a definite theme: mountain madness! I love mountains, have done a bit of climbing myself, and follow the history of mountain climbing, including the Seven Summits.

Put Chris’s accomplishments into perspective, ignoring that he has hemophilia: of the 108 billion humans who have ever been on this earth, less than 500 have ever completed the Seven Summits. And one of our own, Chris, has done it.

And I’ll add that he did it as a fundraiser for our nonprofit, Save One Life, and to highlight the hardship of those with bleeding disorders in developing countries. That alone is worth the watch.

Laurie Kelley in the Andes: “The mountains are calling, and I must go”

Bombardier Blood was made by Believe Ltd, founded by Patrick James Lynch, another man with hemophilia. And originally funded by Octapharma, a European company that manufactures clotting factor wilate® and nuwiq®.

I’m partial to superhero movies. I love the Marvel Universe and especially love X-Men, the Avengers and even Deadpool (despite his dreadful language). But in Chris we have a real-life superhero. And he is now executive director of Save One Life. His journey to new summits continues, all to benefit our family in need overseas.

Watch it, buy it. About 20% of proceeds go to Save One Life. A win-win for all!

Available on iTunes and Amazon Prime.

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