The Forgotten Factor - a Column by G Shellye Horowitz

The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet, you’ll find crutches, multiple canes, a walking boot, ankle and knee braces galore, Ace bandages, self-adhesive…

I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…

I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…

When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the bane of every female hemophiliac’s existence. It often stands in the way of women and…

Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…

I suddenly felt wet when I shouldn’t have. I ran to the bathroom and began pouring blood into the toilet, turning the water there a bright red. I gave myself an IV infusion of factor VIII, a protein I’m missing that’s necessary for blood to clot. As a result, the…

I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with shoes over my lifetime. From a very early age, my parents and pediatrician noticed my ankles…