How to Help Your Doctor Take Hemophilia Seriously
Last week, I met a new local hematologist. He is not my main hemophilia doctor, but with my hemophilia treatment center eight hours away, it helps to have a local connection. He…
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
Why I ditched fashion for sensible shoes
I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with…
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Women Need Early Factor Level Testing
Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it…
Women Must Keep Pushing for Hemophilia Diagnoses
Today my hematologist complimented me. She told me that, had I not persevered, I may have only been labeled a “carrier” and my bleeding disorder may not have been adequately understood.
How I Mastered the Self-infusion of Factor Products
When I was a young girl, I sat next to my father while he self-infused. I handed him his supplies — butterfly needles, syringes, alcohol, cotton, and medical tape — as he…
Protecting Hemophiliacs from the Unknowns of COVID-19
Our hemophilia community has been here before. A novel virus — previously, it was HIV — hit the world, and our community was uncertain about how it would affect us. Patients were…
Reawakening My Inner Hemophilia Advocate During COVID-19
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…
Finding Gratitude in My COVID-19 World
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…
My Healthcare Providers Are Still Learning About Hemophilia
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…
It’s Not Easy Getting Appropriate Care
Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers.
My Self-esteem Was Shattered as a Child. Here’s How I Got It Back
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…
It’s OK to Advocate for Care
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…
Take Care of Yourselves, Carrier Moms!
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…
