The Forgotten Factor - a Column by G Shellye Horowitz

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 have healed more effectively with access to factor replacement products. Many people mourn…

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 professionals working for hemophilia treatment centers (HTCs) was alarming. I wondered why this is happening. Dominant…

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 be some significant eye candy. You have started to flirt through email. You might even be…

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. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.

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 is changed forever. I feel Father Anthony DeMello put it best in his…

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 the age of 5. I limped through elementary school, in pain from physical education classes. I…

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 treatment. I am a woman. I was speaking to a female physician who specialized…

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 other things, like fear, pain, embarrassment, and shame. Sexuality is hard to discuss,…

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 from your insurance company and we have determined your treatment is medically necessary. You are…

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 and limit mobility. If left untreated, they can cause long-term damage, such as arthritis.