The Forgotten Factor - a Column by G Shellye Horowitz

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. Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in…

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 with an eating disorder a few times in college. But I would vehemently deny it if…

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 of all, I learned that I was not alone in my struggles to understand lifelong bleeding…

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 tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…

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 at risk for inheriting the disorder. Not only do people express concern regarding their children, but…

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 us. The alarm goes off in the morning and we do NOT want to get out…

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 a fine line between inconvenience and suffering. Your period should not make you miserable. Movements to…

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 watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.

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. Although Kasper retired three years ago, she continues to…

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 realities of managing hemophilia. Here are some tips for…