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…
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.
Featured Post
Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…
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…
What happens when a symptomatic hemophilia carrier needs minor surgery? Will her increased risk of bleeding be recognized? The story of Kim H. came to my attention on Facebook. She is 39 years old and lives in Pennsylvania. I recently interviewed Kim over Zoom, as her story is important.
It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…
Growing up in suburban Milwaukee, I saw the world through a self-employed lens. My grandfather sold and repaired typewriters, a business he started in downtown Chicago in 1951, a time that must have been most colorful. My family settled in Milwaukee, where my father became the largest independent distributor of…
In addition to having hemophilia B and von Willebrand disease, I also am a caregiver to my 79-year-old mother, whom I live with in Florida. Avoiding COVID-19 has been difficult for us, as she was diagnosed with a severe immune deficiency at the height of the pandemic.
Explore More Columns
Discussion
Discussion