I am part of a community of people that live with bleeding disorders. Hemophilia A (Factor VIII deficiency) was my first exposure when my son was born, over the years I have become involved with people with others like Hemophilia B, Von Willebrands.
Having raised a child with Hemophilia and doing it as a single parent I’m a little sensitive to invisible diseases, rare conditions and ridiculously expensive treatments. In many ways bleeding disorders have become the driving force for much of my life.
Today I was given the gift of being with my bleeder family again. Over several weeks I got to watch them work together to raise money for one of our organizations. Today was the celebration of that. It was phenomenal.
In the past years I have seen them legislate for healthcare, teach each other how to live with the disease and I have seen them come together when one of our own is in need. It’s like nothing I have ever seen anywhere else. We worry together, we achieve together, we play and we sometimes fail together. But it’s always together. We are connected all over the world.
There will always be a story to tell about my family and friends that live with bleeding disorders. Once I get their permission I’ll share them with you.