Addressing medical trauma in the hemophilia community

Priscilla Oren, a member of the hemophilia community, recently shared her family’s history with me. Her son was a victim of the “hemophilia holocaust” in the 1980s. During that time, many people with hemophilia contracted HIV/AIDS and hepatitis from the factor products used to treat their bleeding disorders.

As a result, Oren’s daughter has become skeptical and avoidant of the medical community. She chose not to have children due to her brother’s experiences. Recently, she was diagnosed with stage 4 breast cancer. Her refusal to accept traditional medical treatment has made her situation precarious.

“People do not realize how far-reaching and horrific the effects of the hemophilia holocaust have been on our families,” Oren told me.

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Medical trauma refers to the psychological and emotional distress people may experience as a result of medical procedures, treatments, or interactions with healthcare professionals. Symptoms of medical trauma can include anxiety, depression, post-traumatic stress disorder, avoidance of medical care, and distrust of healthcare providers.

Medical trauma is very real. I lived through the hemophilia holocaust and emerged forever skeptical of doctors and the medical community. It is why I refuse to use factor replacement products to treat my bleeding disorders unless my situation is severe. When I was offered prophylactic treatment to keep my factor levels up, I chose instead to treat on demand.

Anxiety

When discussing my decision to avoid prophylactic treatment with my hematologist, I often refer to the period of my life when my treatment could have killed me. My liver has issues, which I believe to be a result of the treatment I received in the ’80s. When I do have to infuse my medication, the decision is wrought with severe anxiety. I keep anxiety medication on hand for these occasions.

Kayla Mack has type 3 von Willebrand disease, a severe form of the bleeding disorder. We both received cryoprecipitate as a treatment during the “tainted blood era.” When I interviewed her in 2022, it was clear that she also suffered from medical trauma.

“I have a lot of medical trauma associated with my childhood. It is causing me issues as an adult with [an] enormous trauma response to each step of getting better care for myself,” she said.

Mack and I, along with countless other women with bleeding disorders, suffer from medical trauma associated with emergency rooms. Imagine trying to explain to an ER doctor that you have a bleeding disorder when they don’t believe that women with bleeding disorders exist.

“I have a lot of medical trauma associated with ER doctors, as I’ve been pretty consistently gaslighted and treated like a hysterical-looking woman with a pretty minor bleed, yet here I am in the ER. They never pay attention to me. I have zero confidence in emergency room[s] handling a bleed correctly,” Mack said.

These stories underscore the importance of recognizing and addressing medical trauma within the hemophilia community. If you are experiencing medical trauma, please consider reaching out to the social worker at your hemophilia treatment center for support and guidance.

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.