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
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:
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…
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.