The Forgotten Factor
— G Shellye Horowitz

I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught. Workers ended up pinning me down to get my blood. The result was that my factor…

I have seen it many times. When a woman in a family with hemophilia gets pregnant, some feel OK emotionally, but for many, it causes a moment of panic, and sometimes sheer terror. What have they done? They are so scared that they passed…

This year, my flower garden has grown exponentially. A wonderful gift that “bloomed” from my COVID-19 boredom was the chance to develop my horticultural skills. I increased my rose collection from six bushes to 14, and I added sunflowers, teddy bear sunflowers, zinnias, wildflowers, poppies,…

Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You are not alone. Coping with hemophilia day in and day out, as a patient or a…

You are not alone. Coping with hemophilia as a patient, caretaker, or medical provider can seem overwhelming at times. When I am overwhelmed, have a question, or just want to talk to someone who I know will “get it,” I reach out to my “blood sisters” and…

When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound to have unique interactions with medical providers, family members, friends, and colleagues. These interactions range from…

We’ve all had them: those amazing flings that morph into less-than-ideal relationships. During the initial honeymoon phase, the person we are with appears to do nothing wrong. At that moment, we are certain that this time is different. We believe that…

Have you ever been to a holiday dinner with two tables? One table is designated for “the adults” and the other is for “the kids.” Growing up, this was the case at many family gatherings. I felt offended when I, as a teenager in high school, was stuck…

Last week I hit a significant personal milestone. In order to keep myself mobile and healthy, I ride a recumbent indoor bike — a lot! I used to ride over 100 miles a week. Riding my bike has kept me and my joints healthy. It’s also helped…

Last week, I met a new local hematologist. He is not my main hemophilia doctor, but with my hemophilia treatment center eight hours away, it helps to have a local connection. He is a hematologist/oncologist who specializes in cancer treatment and knows very little about hemophilia.

Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it easily. While this is reality, it is not OK. It is imperative for the health of…

Today my hematologist complimented me. She told me that, had I not persevered, I may have only been labeled a “carrier” and my bleeding disorder may not have been adequately understood. For me to be healthy, it is critical that my bleeding disorder is understood. My hemophilia…