Two weeks ago, my daughter helped me move a small refrigerator. I had the front end and she had the back, which was open and exposed various parts. When we arrived at our car, I noticed her finger was bleeding quite a bit. The cut appeared to be long but…
The Forgotten Factor - a Column by G Shellye Horowitz
Learning to Put ‘Me’ Before ‘We’
It isn’t that I can’t be alone. I am an introvert. As such, I can self-entertain for hours. I like spending time with my own company. I find many ways to occupy my time. Hobbies abound — I write, knit, research genealogy, geocache, record podcasts,…
Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…
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…
Knowing When to Move On
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…
Recent Posts
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study