Seeking equitable treatment for women with hemophilia

“As a woman with hemophilia, what situations cause you anxiety?” a friend recently asked me.

What a great question! I loved that she added “as a woman” because women with hemophilia can experience stressors that men with hemophilia don’t. Many anxiety-provoking circumstances affect men and women with hemophilia equally. Others don’t.

In the spring of 2022, I attended the World Federation of Hemophilia’s international conference in Montreal. It was amazing to meet people with bleeding disorders and providers who treat them from all over the world. On the first day of the conference, unfortunately, the muscle under my left shoulder blade started to ache. As I sat in a conference room chair all day, the pain persisted. Oh no, I thought, it was acting like a bleed!

I planned to infuse factor VIII to treat the bleed before dinner, as I have hemophilia A, but we were running late. I delayed treatment and headed to dinner, but during the meal my muscle continued to ache. Then dinner ran late, which added to my exhaustion. When I got to my hotel room, I could barely keep my eyes open.

As a result, I decided to delay infusing until the morning if the pain hadn’t cleared. That was not a smart decision!

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A scary spread of a bleed

I woke up the next morning still in considerable pain. I infused factor immediately and then went to the conference.

Within an hour, I headed back to my hotel room, the pain intensifying. I lay on large bags of ice all day, praying the factor would kick in. Eight hours after I infused, I couldn’t feel my left pinky or ring finger. The muscle where I was bleeding alternated between feeling like it was crawling out of my body to becoming a bed for pins and needles.

The bleed was spreading. How scary! Normally factor VIII infusions help my bleeds feel better within a few hours. Since that didn’t seem to be happening, something was wrong.

Thankfully, a treatment center staffed by professionals was at the conference. I consulted with a fantastic Canadian hematologist who told me I had a serious and deep bleed and would need to increase my factor because the current dosage wasn’t effective. I was worried that I’d clot if I took too much factor, but she assured me that the spreading bleed necessitated a deviation from my norm.

As a woman with hemophilia, getting a bleed doesn’t scare me. But when my body doesn’t respond to factor, I get scared. Normally I’d need two to four infusions spaced one to two days apart to heal a bleed. This bleed, however, required infusions every 12 hours for multiple days. After the next few infusions, thankfully, I felt the bleed stop spreading.

What’s interesting about this event is that apparently, it’s rare for a woman to struggle with ineffective factor VIII. I wonder if it really is rare, or if it’s just missed in women when it happens.

I had 14 breakthrough bleeds in 2022. The goal of treatment is to have no breakthrough bleeds. Some men with severe hemophilia go years without a single bleed.

Eventually, the factor VIII was tested, and we learned what the hematologist suspected: It wasn’t working correctly in my body.

Yes, women also have hemophilia

I met patients from all over the world at that conference. Most assumed I was attending as a caregiver. Many attendees expressed shock to learn that I had hemophilia myself; in fact, I had to show men several photos of my bleeds to prove I was truly a person with hemophilia, with all the bleeding challenges they also endure.

Imagine their surprise when they saw photos of my blown-up elbow! “That’s worse than some of my bleeds!” they exclaimed. “How can you bleed more than I do?”

What a gift to be able to educate. Perhaps they’ll now take notice and help if a woman in their home country is struggling with bleeding.

I find it frightening when I’m not believed. Within the hemophilia community, where safety should exist, the misperception that women cannot get hemophilia remains ubiquitous. Outside the hemophilia community, the misconception is even more prominent. That needs to change. Countless women around the world are not accessing the care they need.

Around a million women worldwide are thought to be affected by hemophilia, and most remain off the radar and removed from care. How terrifying to think that I, or any woman, may need to prove I have hemophilia in a moment when I need immediate care. It’s horrifying to think that one of the million women could hemorrhage in a hospital and succumb to her bleeding while her team never considers hemophilia as the cause.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.