By: G Shellye Horowitz
As a woman with hemophilia A, I often struggle to figure out where I fit. Many women relate, which is why CHES’s Ladybugs program is so necessary and essential. Ladybugs was not the only CHES program I needed. In August, 2024 I was given the gift of attending InhibitCon. I am thankful for all I learned and the immediate connections and support from the first night.
Many steps of my journey included medical professionals who were dismissive and questioning bleeding symptoms instead of addressing them with curiosity and investigation. It was a fight to be heard, believed, and treated. Being acknowledged as a woman with a bleeding disorder was key. I didn’t realize there would be more struggles.
In 2018 I needed a hysterectomy and pelvic floor reconstruction - an 8 hour surgery. Before surgery I asked my HTC for a pharmacokinetic (PK) study as I knew the factor I used was not working right. I was told “A PK study is a waste of expensive medication on a woman not on prophylaxis.” I protested, “My bleeds don’t respond to factor!” They said, “If factor doesn’t help, you’re not bleeding.”
I made it through surgery. When the stitches dissolved, I poured blood. 40+ infusions totaling 60,000 units of factor over 30 days stopped the bleeding. I switched HTCs.
My new hematologist put me on prophylaxis, as I was bleeding a lot. It still wasn’t working. I requested a PK study, again. This HTC agreed. The expected half-life on the product I was taking was 12 hours, mine was 4.6. I was right! I switched to a product that increased my half-life.
Shellye at Crazy, Disco, Trivia, Bingo Night at InhibitCon
A few years later my hematologist retired. The new hematologist questioned my many breakthrough bleeds. After months of being doubted, I requested another PK study. My peak had fallen by 25% and my half-life reduced by 5 hours. My body is now using 50% of my factor in just 8 hours - The time spent over 50% factor after infusion had decreased from 18 to 8 hours. No wonder I was bleeding!
Other than a single positive Bethesda, no explanation was found, which was scary and frustrating. I had multiple bleeds needing dosing to 100% every 12 hours to stop, which wasn’t normal. The falling peaks and half-lives also weren’t normal. I was told it may be a transient inhibitor not being caught by testing. Something was wrong.
As I continued to attend hemophilia conferences, I felt alone. No one could relate or offer much advice for diminishing factor effectiveness.
CHES’s InhibitCon gave me an opportunity to connect with providers and community members who understand what it means to struggle with factor that doesn’t work as expected and the need to figure out new plans. I met people who have similar struggles with factor half-lives. They welcomed me.
For a year I was frozen - I struggled to choose my next treatment step. I was offered new therapies, but no explanations why they would be better. InhibitCon educated me about the immune system and factor products. InhibitCon helped me find a plan I feel comfortable with, and I have a scientific explanation why!
Dr. Tami Singleton presenting on Cardiac Health and hemophilia
I have been to many hemophilia conferences. InhibitCon was one of the top conferences I have ever attended because it truly addressed my current struggles with factor efficiency. I was offered expert input and advice that resulted in immediate practical application moving forward. I am so grateful for this exceptional learning opportunity and to the staff at CHES for filling a critical need for education and support for the inhibitor community.