The Forgotten Factor - a Column by Shellye Horowitz

self-care, hope, forums, myths

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. As a woman with hemophilia, Shellye feels fortunate to have obtained a correct diagnosis and access to care, albeit later in life. Her desire is to spread awareness that women also have hemophilia and need appropriate and equitable care. Shellye lives in Northern California, where she and her dog, “Hope,” love to play on the beach and wander through the majestic Redwood forests.

Motivating Myself to Stick to My ‘Prophy’ Routine

Needle. Vein. My eyes shift back and forth. Needle. Vein. Which vein is large enough to hit without blowing, but small enough to anchor well? Tourniquet, needle, vein, syringe. I hate infusing. I HATE this. Well, tonight I definitely hate this. Maybe I haven’t eaten enough, or perhaps it’s due…

What It Means to Own My Hemophilia

My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.

When Hemophilia and Neurodiversity Converge

I am not neurotypical. My thoughts, perception, and speech can be different than others. It is subtle, but there. For example, if someone tells me something, I take their word literally — and I mean literally. If someone tells me they poked themselves 30…