How your hemophilia experience is shaped by when you were born

New hemophilia treatments, refined techniques, and better scanning play a role

Having personally experienced the challenges of living with bleeding disorders and survived multiple life-threatening situations, I can’t help but reflect on how different my medical journey might have been if I had faced similar health issues in a different decade.

My journey with hemophilia B and von Willebrand disease began with complications during tonsil removal surgery in 1975. Excessive bleeding during the procedure and a week later necessitated a second surgery, which led to my diagnosis at age 10.

Being diagnosed relatively young was a stroke of luck, considering that, on average, it takes women 16 years to receive a bleeding disorder diagnosis. I can’t help but wonder how my situation might have unfolded if I had undergone tonsil surgery in 2023 instead of 1975. Surgeons today possess more advanced tools and techniques to control bleeding effectively. It’s possible that my bleeding disorders could have gone undetected, as is sadly the case for many women today.

The power of advanced imaging

In 2006, I faced another life-threatening medical condition: an extremely rare internal hernia that caused a small bowel obstruction. The diagnosis, requiring a specialized CT scan, shed light on the severity of the situation and led to emergency surgery. I can’t help but ponder the outcome if I had experienced this obstruction in 1975. The limited imaging tools available at that time would have posed a significant challenge in detecting the obstruction, possibly resulting in dire consequences.

HIV and hepatitis

Many people and families affected by bleeding disorders in the 1970s and ’80s undoubtedly wish they had been born at a different time. The significant contamination of blood supply with HIV and hepatitis during that period cost numerous lives, leaving a profound scar on the hemophilia community. Fortunately, tremendous progress has been made since then, with significant improvements in blood screening and safety measures ensuring a safer blood supply for everyone.

Today, children born with hemophilia are fortunate to benefit from such treatment advances. The arduous task of starting an intravenous line on a squirmy toddler has become a thing of the past for those with hemophilia A, thanks to more accessible and effective treatment options such as Hemlibra (emicizumab-KXWH).

Gene therapy has also arrived, providing hope for a potential cure. This progress not only enhances the quality of life for young patients but also provides hope for those who have faced considerable medical challenges in earlier decades.

Reflecting on my medical journey, I am grateful for the advancements in medical care that have shaped my experiences and played a pivotal role in my survival and well-being.