Imagine you are in an emergency room with a life-threatening bleeding problem. How would you convince an ER doctor that you are a woman with hemophilia if they don’t think women with hemophilia exist? I have both von Willebrand disease (VWD) and hemophilia B, a less common form…
Hemophilia and Me
— Jennifer Lynne
Jennifer Lynne is an entrepreneur specializing in digital marketing, a self-professed computer nerd, and a nationally competitive Scrabble player. Jennifer has strong ties to the bleeding disorder community; she was diagnosed in 1975 with hemophilia B and Von Willebrand’s disease at age 10. She is a University of Wisconsin, Madison graduate with a BA in marketing and journalism, and was in MIT’s Birthing of Giants Fellowship Program. A native of Brookfield, Wisconsin, she now resides in sunny Punta Gorda, Florida. Jennifer hopes her column will raise awareness for hemophilia and other bleeding disorders, especially among women.
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The letters start arriving in October. There are plan summaries, notices of benefit changes, and a glossy booklet with a smiling family on the cover. I’m fairly sure that family has never called a specialty pharmacy to ask where their delivery went. For most people, open enrollment is a chore.
Welcome to 2022, a new year and a clean slate. Year after year, my New Year’s resolutions are the same: eat a more healthy diet, work out, and lose weight. This year will be different. Recently, a nurse phoned from the specialty pharmacy that provides medication to treat my von…
As a woman living with hemophilia, I’ve always understood that hemophilia is a man’s world. But I’ve also discovered that the men inhabiting this world are kind, compassionate superheroes with massive struggles of their own. My first National Hemophilia Foundation conference was in 2018 in Orlando, Florida. More than 2,800…
Getting diagnosed with a bleeding disorder can be difficult. I am somewhat fortunate. At age 10 in 1975, I was diagnosed with multiple bleeding disorders. But that doesn’t mean I didn’t have bumps and challenges along the way. Testing, treatment, and classification of bleeding disorders have changed dramatically since…
Doctors often overlook female problems caused by hemophilia. I have many examples of this concept, but few are as upsetting as when I almost ruined a family vacation in 1990. Precancerous cells had invaded my cervix and needed removal. The procedure terrified me! I gathered several opinions, eventually landing…
I cut my thumb above my knuckle a few weeks ago. It didn’t seem like a big deal, but five Band-Aids later, I began to wonder. A few hours later, I noticed my knuckle was swollen, painful, and a bit blue. My thumb wouldn’t bend, and the swelling extended down…
Welcome to “Hemophilia and Me.” Former Hemophilia News Today columnist Shellye Horowitz, who wrote “The Forgotten Factor,” inspired me to dust off my journalism degree and share my own story, and now I’m grateful and honored to join a team of inspirational rock star writers. I plan…
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