Growing up before treatments for hemophilia were safe, part 1

First in a series.

Some people in the bleeding disorders community seem like they’re larger than life — not because they seek attention, but because their lives intersect with so many pivotal moments in our shared history. Lee Hall is one of those people.

I know Hall through his advocacy work and his participation in conferences and countless community conversations. He is warm, funny, and deeply compassionate — someone who makes others feel seen and heard. But sitting down recently to formally interview him reminded me that, behind that warmth, lies a story shaped by medical progress, survival, and experiences many families today can scarcely imagine.

Hall was born in 1971, during a time when hemophilia treatment looked very different from what it does today. Although hemophilia already existed in his family, he wasn’t diagnosed at birth. This was because early testing didn’t reveal he had a bleeding disorder, likely due to limitations in sample handling and testing at the time.

His diagnosis actually came nine months later, after a terrifying accident.

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Hall began walking unusually early, around 7 months old, and was unsteady like many toddlers. One fall changed everything. He struck his chin on a coffee table, and his teeth nearly severed his tongue. A frantic medical journey ensued as doctors struggled to control the bleeding.

In two days, Hall was transported between five hospitals from Florida to Alabama before doctors finally identified the problem. In Birmingham, physicians diagnosed him with severe hemophilia A and administered clotting factor treatment. Hall became one of the first previously untreated patients in Alabama to receive factor concentrate.

While the diagnosis finally brought answers, it also marked the beginning of a childhood spent mainly in hospitals.

In the early years, every infusion required hospitalization. Treatment often meant being physically restrained on a papoose board while medical staff searched for veins to administer the factor. Hall recalls being stuck repeatedly with needles — sometimes dozens of times during a single visit — while his parents weren’t allowed to remain in the room with him.

The experience was obviously traumatic, which he later worked through during therapy as an adult. Repeated restraints and painful procedures left lasting emotional scars alongside the physical challenges of hemophilia.

Treatment also looked different back then. Factor concentrates were derived from plasma, requiring donations from thousands of people to produce enough medication. Preparing that medication was a slow, labor-intensive process, and infusions took longer because the solution was thick and had to be administered carefully. Hall remembers the metallic taste that accompanied each infusion — a sensation many older patients still recall.

With treatment came another danger

Before modern screening and purification methods, blood products carried a significant risk. Infections were tragically common. Hall contracted hepatitis B as a toddler, and the virus spread through his household, landing several family members in the hospital. By age 7, he had already battled hepatitis multiple times.

Yet through these challenges, one thing remained constant: his family’s determination to care for him and keep him safe.

A major turning point came when Hall was about 5 years old, and his parents learned to administer factor at home. Home treatment allowed him to spend less time in hospitals, though the emotional impact of earlier experiences lingered. Years of repeated needle sticks had damaged veins in his hands and arms, forcing infusions to move to veins in his feet and ankles.

Hall also saw firsthand how quickly treatment was improving. His younger brother, also born with severe hemophilia several years later, never needed hospitalization for infusions because home treatment was already standard by then.

The contrast highlights just how rapidly care was evolving — and how much families like Hall’s endured during that transition.

Listening to Hall describe those early years, I kept thinking about how different life is now for children born with hemophilia. Many families today learn to infuse at home quickly, children receive prophylactic treatment early, and safer therapies have dramatically reduced complications.

Hall survived a childhood defined by medical uncertainty, painful procedures, and infections that were once considered an unavoidable part of treatment. And like many people treated with plasma-derived products during that era, he was infected with HIV through contaminated blood products, a reality that would profoundly shape the course of his life.

Next week, Hall shares what it was like growing up at a time when hemophilia treatment had life-altering risks, and how surviving those years shaped the advocate he would later become.

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.