Life Between Peak and Trough
One of the challenges for individuals with hemophilia — whether severe, moderate, or mild — is bleeds. Often people with hemophilia will struggle with bleeds into their joints. The bleeds are painful…
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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My Hemophilia Is an Invisible Disability
When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known…
Factor Replacement Trials Must Include Women
Dear pharmaceutical companies, I am speaking to every one of you who makes a factor replacement product for hemophilia. Thank you for developing more options and safer products…
Advocating for Women with Hemophilia Through National Conferences
Patrice Thomas has utilized her skills as a women’s healthcare advocate to learn about marginalized communities and support structural change. Through her current position at the Hemophilia Foundation of Michigan (HFM),…
My Father’s Legacy and Prophylactic Treatment
I will never forget the evening in the mid-80s when my parents sat my brother, my sister, and me down for a critical conversation. They told us that my father…
Could Relating Common Procedures to Pain Scales Help Patients?
Many of us have been there. We’ve walked into a medical office in pain, seeking relief. As the doctor completes an evaluation, we are asked that common and potentially problematic question: “Please…
An Open Letter to Hemophilia Parents
Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days,…
The Female Factor: Supporting Women with Hemophilia
An opportunity arises Five years ago, Ashley Gregory was asked to head The Female Factor (TFF), a program sponsored by the Hemophilia Foundation of Northern California (HFNC). According to Ashley,…
Grieving My Father’s Absence in My Hemophilia Journey
A conversation Last night I dreamed that I spoke with my father. I asked him how he knew he had a bleed. Did his knee bubble like a soda? Was it tight,…
Diagnostic Terms for Women with Hemophilia
I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even…
We Must Believe Girls and Women with Hemophilia Who Say They Are in Pain
Over the past few years, I have had the pleasure of connecting with many women who are diagnosed with hemophilia A, hemophilia B, or as symptomatic carriers. These women…
Women with Mild Hemophilia Deserve Prophylactic Treatment
When someone has a hemophilia diagnosis, they receive treatment in one of two ways: on demand, in which they are given products to help their blood clot after…
