Counting the Missing Women with Hemophilia
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…
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
Whoops, I forgot I’m living with hemophilia!
Sometimes I forget I have hemophilia. I know that sounds silly, particularly after years of struggle to obtain a diagnosis, yet it’s true. This forgetting is great when I’m healthy and have no…
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Breaking into the Boys Club: Women with Hemophilia
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…
Gratitude on the Hemophilia Journey
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.
We Need to Recognize the Treatment Needs of People with Mild Hemophilia
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…
I’m Bleeding, Believe Me
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…
Beautiful, Bachelorette, Bleeder: When to Disclose a Diagnosis
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…
An Open Letter to Providers Treating Women with Hemophilia
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.
I Feared My Diagnosis and Loss of the Known
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…
Today, I Dance: My Journey to Physical Activity
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…
How to Find Female-sensitive Hemophilia Treatment
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…
Bleeding Disorders in the Bedroom: Sex and Hemophilia
Intimacy. Warmth. Comfort. Security. Closeness. These are things that many of us yearn for in relationships. However, when someone has a bleeding disorder, relationships can also be associated with…
Navigating Insurance Requirements for Factor Can Be Stressful
I got home from work and checked my mail. I had received another notice from an “impartial third party” stating: Dear Ms. Horowitz, We have received an inquiry…
