Iron deficiency has always been a part of my life as a woman with the bleeding disorders hemophilia B and von Willebrand disease. Iron is essential for your body to function, I have learned. One cause of iron deficiency is bleeding. When I am anemic, or my…
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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I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom, Maverick, also has an inhibitor. An inhibitor develops when the immune system…
Dust off those backpacks, girls, it’s time for the school year to begin! When your daughter has hemophilia or another type of bleeding disorder, sending her to school can be overwhelming. But we’ve come a long way since my school days. Children today are fortunate to have access to…
As a person with multiple bleeding disorders, I’m an expert at removing blood from many materials, including carpet, clothing, and furniture. Sometimes the blood wins and will ruin a new shirt. Although I’m in my 50s, a blood stain can still get the best of me, as happened last…
Hemophilia B and experimental gene therapy have been in the news lately. I was even surprised to hear a story on the topic while listening to my local NPR station. Hemophilia B is the less common form of the disorder that arises when a…
In February, I wrote about hemophilia’s effects on bone health after attending a webinar sponsored by Factor My Way, a patient support program. It featured bleeding disorders expert Claudio Sandoval, MD, who explained that everyone with hemophilia A (factor VIII deficiency) is at an increased risk of…
Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…
Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from…
Most women of childbearing age have normal monthly periods. For women like me with bleeding disorders, monthly periods are a “shark week event” with horrific bleeding and pain. The pain made me sweat, shake, and vomit. The severe bleeding had other consequences: I was iron-deficient, anemic, and exhausted. After work,…
Dear Newly Diagnosed Sister, Welcome! You are now part of a supportive community full of love, courage, and inspirational superheroes. Always remember that you are not alone. I was diagnosed with von Willebrand disease and hemophilia B in 1975, at age 10. Your diagnosis Diagnosis of…
As my COVID-19 recovery continues, I have questions. So I called public health expert Frank James, MD, to help. James is active in teaching, research, and medical practice. He is the health officer for San Juan County and the Nooksack Indian Nation in Washington state. He is…
It finally happened. COVID-19 found me. After two and a half years of following the guidelines, I couldn’t outwit the virus. I had two vaccines and a booster on time, and I declined invitations. I wore a mask in Publix and Walgreens even when nobody else was doing it.
A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…
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