Hemophilia and Me
— Jennifer Lynne

The Coalition for Hemophilia B held its annual women’s retreat Nov. 14-17 in Alpharetta, Georgia. Initially scheduled for September, the event was postponed due to Hurricane Helene. Despite the delay, the retreat was worth the wait, and I was honored to attend. Since September, I have proudly served as…

I can still feel the sting of frustration as I replay that night at the recent National Conference for Women and Teens with hemophilia in Detroit. The conference was a place of empowerment — a chance to connect, learn, and share experiences with others who live with hemophilia…

This month, I attended One Drop, a “rare bleeding disorders consortium” hosted by Comprehensive Health Education Services (CHES) in Tampa, Florida. The event supported individuals and families with deficiencies of factor I, II, V, VII, X, XI, XIII as well as rare platelet disorders, such as Glanzmann thrombasthenia. Janet Brewer,…

After the flooding from Hurricane Milton totaled my car, I found myself with a whirlwind of emotions and decisions to make. Now, as I embark on the journey of car shopping, I can’t help but notice how much this process mirrors my life with bleeding disorders. Both experiences require patience,…

Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…

In my Oct. 4 column, I reflected on the devastation Hurricane Helene had inflicted on my community in Punta Gorda, Florida. I never imagined that just weeks later, I’d be writing about a second hurricane — Milton — that would prove even more destructive to my town than Helene.

My grandmother always said, “If you don’t have anything good to say, don’t say anything at all.” She lived by those words, and in all of my memories, I can’t recall her ever speaking ill of anyone. Last week I found myself with nothing good to say, which left my…

I have long admired the world-renowned ballerina Michaela DePrince. Like many others, I was captivated by her inspiring journey from being a war orphan in Sierra Leone to her rise as a star on the global dance stage. Tragically, DePrince recently died at the young age of 29, just one…

At 32, Ashley Zebley from Arkansas is no stranger to bleeding disorders. I recently interviewed her over the phone. Ashley explained that her father has severe hemophilia B, and both her maternal grandmother and great-grandmother exhibited bleeding problems, although neither was diagnosed with hemophilia. Ashley herself is a…

For those of us living with bleeding disorders, a critical question often looms large: In the event of an emergency, if we rush to the emergency room (ER), will the hospital administer our own factor treatment or will we be forced to use theirs? On the surface, it…

My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…

What do all the people with bleeding disorders I’ve interviewed for this column have in common? Each of them has a story about certain doctors not listening to them. I have a story about that, too. But first, I want to acknowledge that I now receive exceptional care from…