My Father’s Legacy and Prophylactic Treatment

My Father’s Legacy and Prophylactic Treatment

I will never forget the evening in the mid-80s when my parents sat my brother, my sister, and me down for a critical conversation. They told us that my father had HIV. There was a very good chance he would die before my sister graduated from high school, and we were not allowed to tell a soul.

HIV was not understood at the time and there was incredible fear surrounding the disease. Ryan White fought that fear in order to attend school, but it still isolated individuals and strained families. Approximately 90 percent of those with severe hemophilia, like my dad, contracted HIV.

Trailblazing with factor VIII

My father was always a trailblazer, fascinated with new science, new cars, and new technology. He wanted to be the first to try the newest products — of any kind! When factor VIII concentrate became available, my father was thrilled. I remember the bags of cryoprecipitate hanging from his IV in our home when my father treated his bleeds. It was a major breakthrough when he had access to factor VIII and could medicate himself via syringe instead of IV.

Sadly, these factor concentrates were infected with HIV. People on the leading edge of hemophilia treatment suddenly ended up facing their own demise.

The reality of HIV

It was difficult watching my father struggle with the anger, fear, and isolation that came with HIV. Knowing he might not live long was painful. Staying silent was torture. As human beings, we often process through spoken word and connection, but my siblings and I could not.

We were fortunate: My father lived until 2010, 25 years after his diagnosis. He saw my sister graduate from high school and walked her down the aisle at her wedding. Meeting most of his grandchildren brought him great joy. He was a rare and lucky individual.

In the end, however, my father developed cancer. Complications from opportunistic infections (from going off his HIV medication) also plagued his final days.

Prophylaxis after HIV

I now have access to prophylactic and on-demand treatment. I use recombinant factor VIII products, which were developed after my father had already been infected with HIV.

Sometimes I feel guilty that I have the products he wanted — a convenient and safe way to manage hemophilia. There are moments I find it hard to reflect on my father’s life. He had severe hemophilia and suffered greatly, whereas I have mild hemophilia and access to products that would have changed his life. My bleeds are not usually as bad as his were, yet factor products help me heal faster and have improved my quality of life. It is a mind trip.  

I know my father would want me to have access to and use these new products. Factor VIII products are improving and changing my life in ways I wish my father could have accessed early in his lifetime. My bleeds heal in days, instead of weeks or months, when I infuse immediately following an injury. When there is factor VIII in my system, I develop scabs when I cut and scrape myself.

Moving forward

Part of taking care of ourselves as women with hemophilia, particularly daughters of men who lived with hemophilia and HIV, is resolving to access the products that hurt our family members. As women, we are getting better at asking for care when we need it. We are learning we are worth it. Even though our fathers, uncles, brothers, and cousins may not have been so fortunate, our ability to obtain safe factor products is a gift.

When I use factor, I honor the memory of my father. I am thankful for treatment advances, so I renew my vow to never forget.

***

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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.

4 comments

  1. Rueleen Kapsch says:

    Thank you, Shellye Horowitz for this wonderfully written story of your father, and your journey with Hemophilia. I am a retired RN, who spent the last 20 years as a Hemophilia Nurse, the most important work of my life. I often said all of the other experiences in nursing prepared me for Hemophilia care. They were, and still remain my extended family. I rejoice at advances in treatment and outcomes, and pray I live to see a cure. May you and your family be blessed!

  2. Raymond W Stanhope says:

    Your story highlights both time and our place in time. As a long term survivor of hemophilia, HIV and multiple hepatitis infections, I praise the advancements in care for all of these. I also look forward with both great anticipation but a touch of trepidation regarding new treatments and possible cures on the horizon for hemophilia. It is also your place in time that affords you the opportunity to receive care as a women with hemophilia which would not have been possible in an earlier time. It is of course disheartening to hear that so many women still struggle to receive the care they need even today.

    Thanks for sharing part of your father’s story with us, many of us have similar experiences regarding the early days of HIV and where we were in our lives at that point in time and how we dealt with that diagnosis.

    • Shellye Horowitz says:

      Thank you, Raymond! I love your comments about place and time – they are definitely something I ponder. In many ways I am thankful my diagnosis was missed as a child, in spite of the struggles and challenges. I was saved from exposure to HIV and hepatitis because I was not diagnosed. That mistake just may have saved my life (my factor levels were tested as a child, but it was only one draw one time and they were a false high… that’s another story)

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