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…
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
Missing persons: Women and girls with hemophilia
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the…
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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…
Hemophilia Inheritance Graphics Need Updating
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…
Beating the Bleeding Disorder Blues
Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. It happens to the best of…
Horrible Periods Are Not Necessary
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…
Women Get Inhibitors, Too, and Should Be Tested Regularly
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…
Hematologist Carol Kasper Discusses the Challenges for Women with Hemophilia
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 —…
Managing Holiday Stress 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…
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…
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.
