If Hemophilia Wasn’t Rare, Who Would Be My Family?

My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work to find the blessings in even the direst situation). If not for hemophilia, I would’ve never crossed paths with my other kind of blood family.

Hemophilia is classified as a rare disease, rare meaning few and far between, scarce, uncommon, and unique. Rare in that hemophilia A affects 1 in 5,000 male births in the U.S. Approximately 400 babies are born with hemophilia each year. Worldwide, 400,000 people are living with hemophilia. About 20,000 are living with it in the U.S. Fortunately, the rarity of hemophilia brings this small community together in a way that other diseases do not.

Illnesses that are more common, such as influenza or the common cold, aren’t known to have support groups that gather with shared concerns over their condition. It is unheard of for people to gather in support if they have the sniffles. With more common illnesses, more information is available to the public due to the high numbers of affected individuals. Finding someone who understands these conditions is much easier than finding someone with hemophilia.

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My Facebook friends list would be much shorter if hemophilia were as common as influenza or the common cold. I would not have a Facebook hemophilia mom’s group or inhibitor group to help with my questions. I cannot begin to count the number of times I’d reach out on Facebook to one of my hemo groups in the wee hours of the morning when my youngest son was in the hospital with inhibitor complications. The support I’ve received over the years is something a doctor could never offer.

If hemophilia were as common as a yeast infection, I would not have several phone numbers at my fingertips for people who can help calm me amid a severe bleed.

If hemophilia were as common as psoriasis, I would miss seeing the faces of the families who are living with hemophilia and thriving. Yet I am part of their lives, and they are part of mine. Not only do we celebrate good reports from the hemophilia treatment centers of inhibitors being tolerated, but we also celebrate birthdays and weddings, achievements at work, and the first infusion at summer camp. The bleeding disorder community comes together because of a common blood bond, yet our community is more family than simple acquaintances.

The breadth and depth of who I am as a mother of two sons with hemophilia are rich because of my friendships and relationships with people in the bleeding disorder community. They are family. These amazing people helped mold me into the mother I am not only because of their experiences but because of their love for those who live with a bleeding disorder.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.