Monday, April 16, 2012

World Hemophilia Day

Today, April 17th is World Hemophilia Day. It's a day to celebrate all those who are affected with a bleeding disorder in some way, whether you have one, know someone who has one, or even just have heard of the term today and want to learn more. There are many bleeding disorders out there: hemophilia, von Willebrand disease, and platelet disorders just to name a few.  An estimated 1 in 1,000 women and men has a bleeding disorder. However, 75% still receive very inadequate treatment, or none at all. World Hemophilia Day is celebrated in honor of Frank Schnabel's birthday, the founder of the World Federation of Hemophilia: a global organization that works diligently to ensure treatment for all affected with a bleeding disorder, regardless of where they live.

Bleeding disorders are a disease and cause that are very close to my heart. I have von Willebrand disease, which is where my blood does not clot properly. This means I bleed longer than a normal person, but not faster. I also bruise easily, and also am more prone to joint and muscles bleeds, as well as nosebleeds and heavy periods. There is treatment available, but it is very expensive.

In the picture below, I am holding the life-saving medicine that I have to inject into my veins in order to help my blood to clot. It is called clotting factor,  and is $1 per unit. I need to inject about 2,000 units for one regular dose for treatment. The cost of only one treatment for one bleeding episode for me is about $2,000. Can you imagine if I had multiple bleeds in a week, month, or year, and what the costs would be for this medicine alone? Even with health insurance, it is still expensive. Now, think of all the people around the world who might not even be able to afford this treatment, much less have access to it at all where they live. There are a lot of people who need our help, and many ways you can help. Together, we can work toward a day when treatment will be available for all around the world.

This World Hemophilia Day, I am wearing red to show my support. I will educate as many people as possible about bleeding disorders. We will Close the Gap in care for people with bleeding disorders globally. Wear red to show your support, hug your favorite hemos, and check out to learn more!

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