Diagnosing the “Whites”

World Hemophilia Day, April 17, was celebrated globally on Friday! It’s a time when our community converges to give support, but even more importantly, to promote public awareness of the “royal disease” so that people can be diagnosed and appreciate the needs of those with bleeding disorders. In fact, the theme of this year is diagnosis.

Diagnosis is a key first step to proper treatment. But globally, most people who have bleeding disorders are in developing countries and most go undiagnosed. Diagnosing them is the goal, but that unintentionally creates more problems. The main problem? Lack of clotting factor concentrates with which to treat them.

While our community typically wears red on April 17 to signify blood and our unity by blood, I decided years ago to wear white. Why white?

A widely used hemophilia logo has featured 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.

While I raised a child with hemophilia, I provided books and newsletters to educate those in the US about hemophilia, and how to access the care they needed. Now, I devote all my time to helping those in developing countries, the “white” part of the logo. One way I do this is to provide funding for surgeries. Untreated bleeding can lead to a deterioration of joints; blood is acidic and eats away at cartilage, leaving a person with arthritis. A new knee can mean a new life to someone in a developing country with a bleeding disorder.

Here is Bommaiah, who received a new knew, with our funding and help from the Chennai, India, Chapter of the Hemophilia Federation (India). That’s my best celebration of World Hemophilia Day yet!