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…
Hemophilia and Me – a Column by Jennifer Lynne
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…
As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the…
My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…
In the marketing world, we have a concept called the elevator pitch. An elevator pitch is a short, persuasive speech delivered in the time it takes to ride an elevator, hence the name. The goal of an elevator pitch is to quickly and effectively communicate a person’s ideas, product, or…
As a person with von Willebrand disease (VWD) and hemophilia, bruises have been a near-constant presence in my life. VWD and hemophilia are bleeding disorders that affect the body’s ability to form blood clots and stop bleeding. Both can cause spontaneous and excessive bleeding, including bruising, heavy…
