Hemophilia and Me – a Column by Jennifer Lynne

The pain that accompanied my periods was excruciating, exacerbated by my two bleeding disorders, hemophilia B and von Willebrand disease. I vividly recall my gynecologist explaining that during a bleeding episode, the severity of my clots and bleeding was comparable to giving birth during menstruation, and thus it…

I rarely disclose my diagnosis of hemophilia B and von Willebrand disease to others. I don’t like to speak about it, which is odd for someone who writes a column on the topic. Writing is different, though. I hope it will make a difference. By sharing…

Clinical trials for hemophilia are essential to advance medical knowledge and develop treatments. But for decades, trials related to hemophilia enrolled only men, given the assumption that women were only carriers of the disease. Consequently, women with the disorder were denied the opportunity to participate in…

Note: This column describes the author’s own experiences with Mounjaro (tirzepatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Confession time. Since November, I’ve been injecting the medication Mounjaro (tirzepatide) once a week to help me lose weight.

I was pleasantly surprised to see a character with hemophilia depicted in a recent episode of “Call the Midwife,” a television series I adore. Usually, I’m disappointed with how hemophilia or von Willebrand disease is presented on TV, as it’s often inaccurate. This time, however, I felt the…

Years ago, a home health nurse came to my house to infuse my medication for von Willebrand disease and hemophilia B. Treatment for my bleeding disorders is often administered intravenously, meaning it’s injected directly into a vein. I’d had surgery a few days before and needed the…

My bleeding disorders, hemophilia B and von Willebrand disease, have significantly affected my family. As I’ve aged, my appreciation for my family has grown tremendously. I’ve come to realize that hemophilia‘s impact isn’t just limited to me; it’s also affected my family in profound ways. True, patients…

People with hemophilia experience prolonged bleeding, even from minor injuries, and may also experience spontaneous bleeding into joints, muscles, and other organs. These bleeds can cause pain, joint damage, and other complications, making pain management an essential aspect of hemophilia care. To alleviate intermittent pain, I employ…

Historically, hemophilia has been viewed as a disease that affects men and boys, which has led to significant gender bias against women with the disease in research, diagnosis, and treatment. As a result, there’s a lack of awareness and understanding of how hemophilia affects women and…

Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can…