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…
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
Staff cuts at the Division of Blood Disorders threaten our community
Note: All four U.S.-based columnists for Hemophilia News Today collaborated on this column. While readers may see individual columns on these issues in the days to come, these writers felt it was important to…
Read more
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…
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 —…
