I’m Grateful for the Life Hemophilia Has Given Me

Originally published on Hemophilia News Today by BioNews, Inc.

Stephanie was my foster child in the ’90s. She was the cutest little girl on the planet. With curly, bright-red hair and freckles, she had a charisma and charm that were hard to ignore.

Stephanie was born with HIV, the virus that causes AIDS. She developed full-blown AIDS when she was an infant. Stephanie surpassed doctors’ expectations by reaching her third birthday.

When I asked 12-year-old Stephanie if she wished she hadn’t been born with HIV, her answer surprised me.

“No,” she said. “Having AIDS is all I know.”

Crazy, right? Here was a child who had been kicked out of her church and faced countless medical procedures, who woke at 2 a.m. every morning to take her medicine on schedule, and who saw her family ripped apart — and she was telling me she wouldn’t change her AIDS diagnosis.

I finally get it

A couple of decades later, I finally understood. It’s hard for me to imagine the trajectory of my life if I hadn’t been born with hemophilia B and von Willebrand disease. If it weren’t for my bleeding disorders, I wouldn’t have become involved with Camp Heartland, a camping program for children with HIV/AIDS. I wouldn’t have met the people who remain my closest friends and have touched my life for decades.

I wouldn’t have been inspired to try to do good. Thanks to my bleeding disorders, I’ve had inspiration all around me. From Stephanie to my good friend Neil Willenson, the founder of Camp Heartland, inspiration has been a solid part of my life.

When I have a bad day or am feeling blue, I think about the many people I know who’ve been dealt a hand worse than me. If they can find the nerve to get out of bed every morning and face another day, so can I. I’m grateful every day for my extraordinary luck.

Without hemophilia, I wouldn’t have driven around baseball legend Paul Molitor for a day, gotten front-row seats to a Willie Nelson concert, or met former President Nelson Mandela of South Africa. I wouldn’t have been in the audience at “The Oprah Winfrey Show” to watch my friend accept Oprah’s Use Your Life Award.

Hemophilia has made me resilient under pressure. I know how not to panic in the middle of a bleeding episode because panicking doesn’t help in any situation, ever.

Thanks to hemophilia, I know how to accept things as they are. I can’t wish away a joint bleed or a swollen tongue. “It is what it is,” I often say.

Importantly, without hemophilia in my life, I wouldn’t be writing this column. And through this column, I have met many exceptional people and had opportunities to increase awareness of hemophilia in women.

Would I wave a magic wand and make my hemophilia disappear? I agree with Stephanie — a life with bleeding disorders is the only life I know.