Social media. You either love it or hate it. I must confess that I am guilty of wasting time on Facebook and Twitter, but I have used these outlets as a means of support on more than a few occasions. In the bleeding disorder community, several Facebook groups provide a forum for the community to ask questions, get support, and even “vent” when an unfair issue arises. In some groups, people can get a little too comfortable giving advice that should only be given by a provider. But for the most part, these are places where people can get information and develop desperately-needed relationships.
Several weeks ago, a question caught my attention: “When someone asks if your child is disabled due to their hemophilia, what do you say?” I can’t believe someone would even ask that question. But the responses were interesting. Many people emphatically said, “No!” Others commented with vigor that no, hemophilia is not a disabling condition. It is ridiculous to even consider. No questions asked.
And then others said, “Yes, it is.” Some gave heartbreaking examples of how their bleeding disorder has completely disrupted their lives. I commented that for years my son was disabled due to complications from his inhibitor. He couldn’t walk and was in a wheelchair for over a year. Yes, that was disabling. We needed a handicapped placard and carted around a custom wheelchair everywhere we went. It was not the life I ever expected my young son to live. While others with hemophilia were thriving, playing baseball and soccer, my son was pale and could not extend his leg. Yes, hemophilia was disabling.
Another part of the population that identifies as disabled due to a bleeding disorder are people living in developing and underdeveloped countries. These people have little if any factor and often heal from a bleed with rest, ice, compression, and elevation while their joints continue to undergo damage as the result of prolonged bleeding. They suffer. (For more information on how to help these warriors in other countries, please visit SaveOneLife.net.)
A person with a debilitating inhibitor knows what it is like to experience disability in some shape or form. A person with less than 1 percent clotting factor without an inhibitor who treats two or three times a week can experience life with few, if any, joint bleeds. You can’t simply say, “No, hemophilia is not a disability,” or “Yes, it is.” The unfortunate truth is that in 2018, despite new treatments, hemophilia can be a disability.
My family no longer needs the handicapped placard. My son is running and playing, but not on the baseball or soccer team. The damage to his joints has limited him, but considering where he was a few years ago, I would say he is thriving.
We are unique. A medical diagnosis given to one will not necessarily look the same in the other. Our experiences are different, and treatments are improving and changing lives. Be aware of others and show compassion. Count your blessings and be grateful that your bleeding disorder has not impaired your way of life.
For those whose experiences are not the norm and have suffered more than most, I know exactly how you feel.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.