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living with hemophilia: a journey of resilience, strength and hope for the future
4 minute read
for someone with hemophilia, something as simple as a fall and bumped knee can quickly cause a life-threatening hemorrhage or internal bleed requiring hospitalization.
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since before i can remember, hemophilia has been the main character in my story.
i was under six months old when i was diagnosed with a severe form of hemophilia – a rare, hereditary bleeding disorder.
characterized by excessive bleeding, hemophilia prevents blood from clotting, resulting in frequent and potentially life-threatening bleeds within the body.
life with a rare disease feels like living with rules you didn’t choose. but my hope is that there can be a different end to the story.
a life shaped by severe hemophilia
as someone diagnosed with severe hemophilia b as a newborn, life growing up in the 1960s was certainly different.
there are two main types of hemophilia. hemophilia a is the result of a factor viii (fviii) gene defect, and hemophilia b the result of a factor ix (fix) gene defect – each affecting the body’s ability to clot blood. for perspective, normal fix levels in a person’s plasma, the protein-rich liquid in blood, are between 50 and 150 per cent.
for someone like me, with the most severe form of hemophilia b, those levels are below 1 per cent. the result is frequent and spontaneous internal bleeds, abnormal bleeding following an injury, as well as joint and muscle damage.
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when i was born in 1961, the life expectancy of someone with severe hemophilia was just 20 years. there were limited treatments available, and succumbing to the debilitating effects of the disease was considered an inevitability.
looking back, i don’t have many good memories of being a child.
for someone with hemophilia, something as simple as a fall and bumped knee can quickly cause a life-threatening hemorrhage or internal bleed requiring hospitalization. growing up, i was constantly told i had to be careful, and that hemophilia could kill me. it shrouded everything i did.
i spent most of my life afraid. hemophilia made me terrified of the world around me.
my career path was also dictated by my disease. i was constantly told “you can’t do that,” and that i could only aspire to work an office job.
but i always had a strong sense of determination, grit and a desire to win.
i knew hemophilia wouldn’t make it easy, yet i still started and built a successful business.
“it takes real strength and determination to survive, and i believe that’s what drove me to be successful in my career and personal life,” i like to say. “physically, i’m a three-toed sloth, but mentally, i’m an olympian.”
misconceptions about living with hemophilia
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many people don’t know how expensive hemophilia is. the cost of hemophilia treatment for the 3,671 canadians living with it is between $300 million and $400 million per year to treat all patients. i have always considered myself immensely fortunate to be canadian because of the treatments and care available to me and the hemophilia community.
hemophilia has caused long-term damage to my joints and muscles. i’ve had 12 orthopedic surgeries—challenging for anyone, but for someone with a bleeding disorder, even more dangerous, and with a much longer recovery period.
the damage to my body, scarring, and joint deterioration has been detrimental to my physical condition and quality of life. bleeding is far from the only symptom.
something as simple as walking hurts my ankles, lower back, and sacroiliac joint. between the pain and needing to be careful, i have missed out on a lot of life experiences.
my neighbours hosted a super bowl watch party—only four houses away, but i couldn’t go. the slippery ice, rocks and uneven footpath, driveway incline, and lack of visibility in the dark all made the risk of falling too great, especially at my age.
those missed moments add up over time. the constant planning. the risk assessments. the “what ifs.”
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hemophilia is lonely. given the rarity of the condition, you’re physically alone. on top of that, the psychological burden is particularly isolating when others don’t understand your experience. it’s a horrible disease to grow old with.
what we do now matters
over time, i’ve seen how care and healthcare professionals’ attitudes have evolved from cold indifference when i was growing up to truly listening and advocating for patients today.
while i am grateful to have access to care, it can be slow and fraught with challenges. so, as a self-proclaimed “professional patient,” i’ve had to advocate for myself. my condition may be rare, but my experience is similar to others living with hemophilia. that’s why, in recent years, i have focused on supporting the broader bleeding disorder community, collaborating with experts from mcmaster university.
thanks to innovations in treatment and care over the past decades, my hemophilia has been well-controlled for a long time. now, at 64 years old, i find myself reflecting on how my parents were told i would be lucky to survive childhood, and i realize just how far i’ve come.
even though i’m able to manage my bleeds, the damage to my body and my mind has been great.
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as we take stock of the current state of hemophilia care, it’s worth striving for better. better treatments for patients, who shouldn’t have to live in fear. better efficiencies across the healthcare system, where long-term solutions can reduce lifelong costs of care.
hemophilia will always be central to my story—but it’s not the last chapter. when i think about how different life could be for a child born with hemophilia in canada today, compared to 1961, it gives me a lot of hope for the future.
my wish is that kids today can grow up aspiring to more than just “surviving,” with better access to treatments, compassionate care, and quality of life.
leo walsh is a canadian living with severe hemophilia b. leo is currently president and ceo of hemalytic inc., a research and data management company catering to the needs of the bleeding disorder community.
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