G Shellye Horowitz, MA, PPS, has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. She also has hemophilia A. Her advocacy work includes an emphasis on early diagnosis and care for females with hemophilia and strengthening diagnosis and care for all people with mild bleeding disorders.
Shellye is a licensed school counselor and principal with over 30 years experience. She currently works for the University of Washington as a researcher in the Johnsen Lab. She lives in Northern California, where she and her dog, “Hope,” love to wander through the majestic Redwood forests. All opinions are her own.
As a woman with hemophilia, one of the greatest challenges I face is being believed. This challenge is multifaceted. First, I struggle to convince people that women can and do have hemophilia. Next, I have to explain…
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Today, when girls and women struggle to obtain a hemophilia diagnosis and proper treatment, I am angry. We need to do better. A timely diagnosis is crucial, as delayed testing or treatment can endanger women…
“L’hitraot” is a word I learned while living in Israel. It is a gentle way to say goodbye, essentially meaning “see you later.” I am transitioning to a new job at a nonprofit organization, and this will be my…
What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief! I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and…
There are multiple types of medical trauma. A medical emergency can be traumatic. Chronic medical issues can be traumatic. Struggling to obtain a diagnosis and treatment is traumatic. I believe that one of the most consequential results of…
My heart raced and pounded as a bead of sweat rolled down my cheek. My chest was so tight that it hugged my heart, which seemed to be doing flips. What was happening to me? I wanted to run…
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…
When it comes to home maintenance and improvement, there are several types of people. Some look the other way when their home needs upgrades due to a lack of time, money, energy, or interest. Others coordinate with repair people…
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.
I gaze at the glorious sunrise as I take off in my red RAV4. On this particular trip I plan to make my way down from my home in Northern California to Los Angeles. My daughter and…
As a woman with hemophilia who has a proper diagnosis and a fantastic treatment plan, I do not take my health for granted. I feel fortunate and blessed to have reached a place where coping with bleeds…
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…
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