Growing up before treatments for hemophilia were safe, part 2
'Families knew you were going to catch hepatitis'
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Second in a series. Read part one.
In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care available today.
But the challenges Hall faced didn’t end when treatment moved into the home. In many ways, the most dangerous chapter of his life was still ahead.
For people with hemophilia treated in the 1970s and early 1980s, plasma-derived factor concentrates were lifesaving — but they also carried hidden risks. Blood from thousands of donors was pooled together to manufacture treatment products. At the time, there was no effective screening for viruses, and safety processes we now take for granted didn’t exist yet.
Hall remembers that infections were almost expected.
“Families knew you were going to catch hepatitis,” he told me. In his case, that prediction came true early. As a toddler, Hall contracted hepatitis B through treatment. The virus spread through his household, and multiple family members were hospitalized in what he describes as a domino effect.
By the time he was 7 years old, he had already battled hepatitis more than once. Then came another devastating complication.
In his early teens, Hall developed immune thrombocytopenia (ITP), an autoimmune disorder that destroys platelets. For someone with hemophilia, platelets are critical because they help form the initial plug that allows clotting factors to do their job. Without them, bleeding becomes extremely difficult to control.
Hall suddenly found himself in an impossible situation: His factor levels were already dangerously low due to hemophilia, and now his platelet counts dropped to almost nothing. Everyday contact caused bruising and bleeding. Even a gentle hug could leave marks across his back.
To manage the crisis, doctors escalated treatment. Hall infused factor daily and received additional blood products regularly. He was also placed on high doses of prednisone in an attempt to stimulate platelet production. The side effects were brutal.
He gained significant weight from the steroids, developed a bleeding ulcer, and endured months of intense medical intervention. Ultimately, doctors concluded that the only way to control the autoimmune attack was to remove his spleen.
Hall underwent a splenectomy in early 1985. Almost immediately, his platelet count rebounded, and his body regained some clotting ability. But while the surgery helped stabilize his condition, it didn’t explain why he had developed ITP in the first place.
That answer came later
In July 1985, Hall learned he was HIV-positive after being infected from contaminated clotting factor several years earlier. Reliable HIV testing didn’t exist until the mid-1980s, meaning many patients had already been exposed before anyone knew about the danger.
Looking back, doctors realized the immune disruption caused by HIV had likely triggered his autoimmune complications.
For Hall, the diagnosis was devastating but not entirely surprising. Friends in the hemophilia community were becoming ill, and some were already dying. Many teenagers and young adults who had grown up together were suddenly facing life-threatening infections contracted through the very treatments meant to keep them alive.
Hall told me that over the years, he lost dozens of friends to HIV and AIDS-related complications — people he had grown up with at hemophilia camps, clinic visits, and community gatherings. One loss in particular still stands out: his best friend, Alex.
The two had grown up together in the hemophilia community and often found themselves hospitalized at the same time. When Hall was 16, Alex — just 17 or 18 years old — died from AIDS-related complications shortly after they had been patients in neighboring hospital rooms.
Hall learned of his friend’s death in the most abrupt way possible: by calling the hospital to check on him, only to be told that Alex had died over the weekend.
“One by one,” Hall said, “they were gone.”
For many in the bleeding disorders community, friendships formed through shared medical experiences were deeply personal. These weren’t distant acquaintances; they were kids who understood hospital rooms, infusions, and chronic pain in ways classmates often could not. Losing them meant losing part of a shared childhood.
Hall missed an entire year of school due to hospitalizations. He experienced kidney hemorrhages and constant bleeding episodes. The future felt uncertain in ways younger generations may struggle to imagine.
Yet amid the fear and loss, something else emerged: advocacy.
Next week, I’ll explore how Hall moved from surviving those difficult years to becoming a longtime advocate and mentor in the hemophilia community — and what he hopes people will remember most about his life and work.
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 consult your physician or another qualified healthcare 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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