In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.
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.
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COVID-19 has upended our lives. It is hard. As an individual with a chronic condition, I find myself worrying about how it will affect me in ways that may be different from those of my neighbors or co-workers without chronic conditions. Thankfully, the hemophilia community has…
Over the past few years, I have learned that bleeding disorders are complex, particularly for women. Hemophilia is not always easy to understand or treat. It can take women up to 16 years to receive an accurate diagnosis. Then treatment plans are created, which can be challenging…
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This week is National Eating Disorders Awareness Week. Eating disorders are tough to address, yet critical, as many suffer in silence. I was one of them. I struggled with an eating disorder a few times in college. But I would vehemently deny it if…
I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life. First of all, I learned that I was not alone in my struggles to understand lifelong bleeding…
Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…
Inheritance patterns in hemophilia are a common discussion topic for many reasons. Among the reasons that people seek information about hemophilia inheritance is their desire to better understand if their future children might be at risk for inheriting the disorder. Not only do people express concern regarding their children, but…
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We grow up hearing our mentors — women we respect and love — regularly complain about menses. Periods seem to be a fairly universal inconvenience and bother. However, I believe there is a fine line between inconvenience and suffering. Your period should not make you miserable. Movements to…
Recently, I was browsing the website of the National Hemophilia Foundation and came across a series of videos encouraging people with hemophilia to have regular testing for inhibitors. As I watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.
Recently, I had the pleasure of speaking with Dr. Carol Kasper, a highly regarded hematologist who has dedicated her life’s work — over 40 years of research and patient care — to individuals with hemophilia. Although Kasper retired three years ago, she continues to…
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