When scars from my IV infusions lead to false assumptions
Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had…
Articles by G Shellye Horowitz
When hemophilia makes it harder to find care for other conditions
I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels…
Celebrating small wins as I learn my osteopenia hasn’t progressed
I receive an email saying the test results from my second bone density scan are in. Shaking and holding my…
Why knowing which hemophilia treatments don’t work is valuable
I groggily sat up in the hospital bed, sipped some water, and stared into the distance. Suddenly, a nurse pointed…
What decades-long diagnosis delays mean for women with VWD
Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper…
It’s time to change how we classify hemophilia severity
While riding a bus at the first hemophilia conference I attended, I met a young man who had mild…
I’m still looking for a factor product that works for me
Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking…
The process of trying a different factor replacement therapy
Note: This column describes the author’s own experiences with factor replacement therapy. Not everyone will have the same response…
Men with mild hemophilia struggle to access care, too
When I worked for the Hemophilia Federation of America (HFA), I was incredibly grateful for its dedication to bringing awareness…
Uniting women with X-linked disorders to prompt change
“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended…