My dad’s life was incredibly difficult. He was in pain all the time and misunderstood by others. He grunted and grumbled, and walked with an exaggerated limp. People thought he was a hypochondriac who wouldn’t stop talking about his ailments.
Some found him interesting, others thought he was generous, and many thought he was annoying. I now understand more than ever that he was a strong survivor.
My great-grandfather Morris was born in 1878. He was known as a “bleeder,” but never given a formal diagnosis. He died of a stroke while vacationing in Paris in 1935.
Today, we know that if a man with hemophilia has a daughter, she is an “obligatory carrier” — meaning that if he has a mutated X chromosome with hemophilia, she will inherit that chromosome from her father.
My grandmother June was an obligatory carrier and likely had undiagnosed mild hemophilia herself. She passed hemophilia along to my father, Marty, who was born in 1942, and his younger brother, Gary, born in 1944. Both had hemophilia, but neither was diagnosed at birth.
My Uncle Gary was 4 and my dad was 6 when they went to have tonsillectomies on the same day. My father lived through the procedure, while Gary did not. The trauma would haunt our family for decades.
My dad still mentioned survivor’s guilt as an adult. It is likely that undiagnosed hemophilia played a role in Gary’s inability to make it through that surgery. Miraculously, my father somehow survived.
My father was a disappointment to his dad, who wanted an athlete for a son. But constantly suffering from injuries and bleeds, my dad simply couldn’t be an athlete.
After a bad knee bleed in elementary school, my father and his mom traveled by train from California to New York to see a pediatric specialist. Thanks to that trip, and years after his brother’s death, my father was finally diagnosed with hemophilia.
My father didn’t have many friends, and he struggled to fit in. It’s hard to have an invisible disability that isn’t understood. His bleeds caused pain and joint damage, yet the treatment options we have today weren’t available to him back then.
My dad also didn’t do well in college, and it took him extra years to graduate.
Recently, I’ve managed to gain a lot more insight and empathy regarding all of this.
I found my father’s old treatment logs, and I was shocked. When he had a joint bleed, he was given half of the factor replacement dose that I am given every 72 hours to prevent bleeds. Half of my protective dose for a significant bleed!
No wonder he was always in pain. When I think about how much factor replacement products have improved my quality of life, I wish they could have done the same for him.
Unfortunately, they did not improve his life. Instead, they gave him HIV and hepatitis. He struggled to find a career, and eventually went on disability due to complications from hemophilia and HIV.
Rising from these challenges, he became an incredible early advocate for people with HIV, at one time owning and running the most comprehensive HIV information clearinghouse on the internet. He was even featured in POZ magazine.
Today would be different
It is crazy to imagine how different his life might have been if he had grown up today. He would have had early access to safe factor replacement products to prevent bleeds and joint damage. Instead of spending countless days in hospitals and recovering from injuries at home, he could have played those sports and bonded with his dad.
When he and his brother had surgery, they would have been kept safe with factor products. There would be no survivor’s guilt. He would have had a more normal life.
When my dad was born, the average life span of a person with hemophilia was 20 years. He beat the odds with hemophilia, and then with HIV. When he was infected with HIV, we were told he wouldn’t see my sister graduate from high school, but he lived another 25 years.
My dad died from cancer at 68, outliving his hemophiliac grandfather by 11 years. Today, he would be expected to have a normal life span.
With advancements in subcutaneous and gene therapies, life with hemophilia is changing fast. As researchers continue to develop new treatments, hemophilia will be even more easily managed or perhaps even cured.
I am who I am today in part because of all I saw my father go through. I am thankful for his presence in my life. His suffering taught me so much. In my times of frustration and despair, I often ask myself what my dad would do.
That said, I would give anything for him to have a “do-over” with the hemophilia treatments of today. He would be thrilled with how far we have come.
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.
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