I have von Willebrand disease (VWD) and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. Hemophilia is often thought of as a condition that only affects men, but women can and do have it, too.
Hemophilia and Me – a Column by Jennifer Lynne
Hurricane Ian, which battered the southeastern United States and the Caribbean in late September and early October, nearly destroyed the home of a client of mine. She compares the damage to a violent tornado combined with a devastating flood. Parts of her home were gutted. In the aftermath, she…
Greetings! I’m writing from Orlando, Florida, my temporary oasis from the wrath of Hurricane Ian. Last week, my mom and I evacuated to this inland city from Punta Gorda, on the coast in the southwest part of the state. Staying was not an option as my mom is oxygen-dependent…
Well, hello, Ian. Please go away. As I write this, the track of Hurricane Ian has shifted south from Tampa, Florida, and toward my home in Punta Gorda. Not my first time at this rodeo. In 2004, Hurricane Charley, which was Category 4, devastated my hometown. But this…
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…
“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…
