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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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.
I love the holidays — candlelight, decorations, the smell of baking, and time with family. I look forward to the holidays every year, but I am also keenly aware that holidays can be more stressful with the…
The World Federation of Hemophilia states that any person, male or female, with factor levels below 40 percent has hemophilia. However, conventional medical wisdom has not caught up. Women who have abnormal bleeding should be assessed…
Since hemophilia was discovered, it has been accepted as a male disease. No one questions that a man is struggling with hemophilia. A man with a bleeding disorder living in a developed country is rarely denied access…
Living with hemophilia is challenging for anyone. It can be even more difficult for women who struggle to obtain a diagnosis and treatment. Despite the struggles, I am thankful for many things. A missed diagnosis…
I am a woman with mild hemophilia. I was angry when I realized that I had gone years without proper diagnosis and treatment. Over the years, I have had multiple bleeds that would have healed more effectively with…
I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed by top medical professionals working for hemophilia treatment…
You’ve been talking to prospective Mr. Wonderful for a few weeks now. You have a lot in common, and if he looks anything like his profile picture, you know he’s going to be some significant eye candy.
I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked…
Getting diagnosed with hemophilia is a whirlwind. It doesn’t matter if someone is diagnosed at birth or in their 40s: Their world is turned upside down. It is terrifying. Life is changed forever.
I grew up believing that it was impossible for a hemophilia carrier who was also a woman to manifest the condition. I had stitches five times before the age of 5. I…
Four years ago, I relocated to a rural community. My hemophilia treatment center (HTC) was six hours away, so I met with a local hematologist to come up with a plan for treatment. I…
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