Unpacking anger’s ‘partner’ emotions can help the healing
It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times,…
The Forgotten Factor
— G Shellye Horowitz
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.
Featured Post
Surgical planning is an absolute must when you have hemophilia
Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they…
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Could AI allow for a faster medical diagnosis of rare conditions?
Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves.
Even amid medical challenges, I find reasons to be thankful
I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of…
Could my chronic GI problems lead to a new diagnosis?
Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a…
Why equal representation matters in the bleeding disorders space
I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn…
Emergency needs become a wake-up call for this rural patient
Well, it was bound to happen sometime. My first ambulance ride. I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I…
A ham radio license makes me feel safer as someone with hemophilia
“Whiskey-Bravo-six-Zulu-Yankee-Yankee looking for a radio check,” my dad called out into his faithful Kenwood handheld 2-meter radio. “W-B-6-Zed-Y-Y, I hear you loud and clear,” came an answer from radio land. This was my dad’s…
Correcting misinformation about women and X-linked disorders
Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s…
Finding life’s miracles despite living with hemophilia A
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — often attributed to Albert Einstein I live…
How a new doctor made me feel safe as a woman with hemophilia
Forty-six. That’s how old I was when I finally accessed the hemophilia care that I’d needed my entire life. I believe the reason it took so long was that I’m a woman. It…
What I’ve learned about obesity, joint pain, and hemophilia bleeds
It’s never easy to talk about weight. Like many people, my weight has wildly fluctuated throughout my adult life, sometimes by as much as 60 pounds or more. I’ve struggled to find a happy…
