By Dana Kuhn
My family had a hemophilia history, but we weren’t aware of it. My mother’s brother was undiagnosed and died from a bleeding ulcer. My mother had four boys, the first two were born with hemophilia and the second two without. My older brother and I didn’t know we had hemophilia until we were 19 and 17 years old.
Throughout our younger years we were very active and played sports. We had a lot of sprained ankles, swollen elbows, and muscle bleeds. People would often ask why it would take us so long to heal from these injuries. It was often thought we were faking it in order to get out of going to school. Eventually my mom said, “Enough is enough, something needs to be done.”
My mom and our family physician researched the cause of this possible bleeding problem. It was discovered that my brother and I might have something called hemophilia. My mom contacted the National Hemophilia Foundation and spoke to someone who counseled her to take her sons to a medical clinic for testing. She did exactly that, and we were both diagnosed with mild-to-moderate hemophilia A.
Back in the early 1970s we didn’t know anything about factor or how to treat our hemophilia. We already had an established lifestyle and continued our risky activities and experienced bleeds in what we now understand were target joints. We accepted our injuries and would treat with an icepack until they eventually got better.
In my early adulthood years of the 1980s, I was living in Tennessee, married, and having children when I started to go to a Hemophilia Treatment Center. I was told about clotting factor and cryoprecipitate available to treat bleeding episodes. However, I never personally needed it until I broke my foot at age 30. I ended up going to an emergency room, told them I had hemophilia and that I needed something like cryoprecipitate or factor VIII. The doctors decided to give me factor instead of cryoprecipitate. I was never told it could have been infected with HIV. In that single dose of contaminated factor, I received both HIV and hepatitis C.
Having hemophilia, HIV, and hepatitis C, who would have ever believed I would live so long! I endured two grueling years of Alpha Interferon treatments for hepatitis C, yet it had less than 33% efficacy in clearing it. When I subsequently almost died from hep C, I wondered why the Alpha Interferon ended up working after all.
While friends and acquaintances were dying of HIV/AIDS all around me in the 1980s, I wondered if I would be next. When my wife, Patty, died of AIDS, which I unknowingly transmitted to her, I wondered, “Why her and not me?”
A God-given passion for discovering the truth behind the contaminated blood products, the unnecessary infections and deaths of so many blood brothers, the unnecessary death of my wife, and the need for blood safety drove me to be a leader in advocacy.
Due to my generation’s passion, advocacy, and leadership, children and young adults now have the safest and most efficacious clotting products. Tears of joy come to my eyes when I see children and young adults living without permanent joint damage, having safe prophylactic treatment, experiencing limited pain, and having quality of life ahead of them. In contrast, my generation knew about pain and permanent damage after each bleed and contaminated products.
My age group wasn’t initially treated prophylactically. Many didn’t live to see the advantages and treatments that are available today. For so many, even the treatment for HIV caused complications. For many others, hepatitis kicked in, destroyed their liver, and claimed their life.
My biggest concerns with growing older are not the wrinkles, gray hair, aches and pains associated with past bleeds, not being as active as I once was, or developing other aging medical conditions. My two biggest concerns are maintaining quality of life and not being forgotten and appreciated for the battles and scars we endured to make this community safer and better.
This year I slipped on a patch of ice, fell on my hip, crushed my sciatic nerve and had bleeds into every muscle from my gluteus maximus to the abductors. The nerve damage was so severe I couldn’t walk at first, but eventually was able to get around on crutches. It takes a long time for nerves to return and work correctly. It took 5 months of physical therapy before I was close to being healed. I definitely contribute the slow healing to age. As you grow older the bleeds will stop, but everything else takes longer to mend.
This accident concerned me with the importance of quality of life. Now that I have retired, I feel I am sometimes perceived as old and no longer a vital member of society. I think being perceived as not important or useful is what bothers me the most as I age. I still have much to offer our community but sometimes feel like a racehorse put out to pasture.
Nevertheless, I continue to live one day at a time and look for opportunities to share my experience, encouragement, empathy, and care with all those I encounter. I find purpose in each day and find joy and fulfillment in seeing younger people with hemophilia live healthier, safer lives.
Now at the end of my sixties, I give thanks to God for life and continue to live “against all odds!”
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