The end of 2022 is rapidly approaching, and I’ve made nary a dent in my fitness and diet goals for this year. Oh, sure, I have a ton of excuses — like my foot that swells up when I walk more than a mile — but there really…
Hemophilia and Me – a Column by Jennifer Lynne
“It’s my party, and I’ll cry if I want to, cry if I want to, cry if I want to. You would cry too if it happened to you.” On Sept. 6, my birthday, this 1963 Lesley Gore song, “It’s My Party,” played in a continuous…
Shared decision-making in healthcare was a topic at the National Hemophilia Foundation’s Bleeding Disorders Conference I attended virtually last week. Shared decision-making means you have a voice and your overall well-being should be considered as part of any treatment plan. We think of medicine as a science. But as…
Good thing this column isn’t a podcast because I’m not speaking today. Last night, I chomped down on my tongue for the second time in two months. Not a big deal, you might say. True. Unless you have a bleeding disorder like hemophilia B, von Willebrand disease, or,…
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…
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+…
