About a month ago, my world was turned upside down when my kneecap dislocated while I was simply shifting my leg on a recliner. This unexpected incident brought back memories of my teenage years, when I underwent two surgeries to keep my kneecap in place. To add complexity to…
Hemophilia and Me – a Column by Jennifer Lynne
Welcome to my world, where it seems like I’m perpetually hosting a pity party. The past year has thrown more curveballs my way than I’d ever anticipated, leaving me caught in a never-ending hurricane of challenges. While I’m sharing my struggles here, I’m also keeping in mind the resilience of…
During my teenage years, I vividly recall attempting to convey the severity of my menstrual bleeding to a male hematologist. I described my bleeding by giving examples of the products I used, such as “superplus tampons” and “overnight maxi pads.” He couldn’t relate. In a somewhat perplexed tone,…
I’ve previously written about fellow Floridian Kayla Mack, a woman in her 50s who has Type 3 von Willebrand disease (VWD). Her severe bleeding disorder is similar to those who deal with severe hemophilia, as her blood clotting factor VIII levels are nearly negligible. Her von…
Dear 11-year-old me, Life might feel overwhelming at this moment, but remember, you are stronger than you realize. The road ahead will present challenges, but they will shape you into an incredibly resilient person. Your journey with your period has begun, and I know it’s tough. Those…
I’d enjoyed several months without any bleeding problems until I experienced an unexpected ankle bleed last week. The elevator at my condo was out of service, so I had to climb four flights of stairs multiple times a day, which put additional strain on my joints. Just when I…
Nearly a year has passed since Hurricane Ian wreaked havoc on southwest Florida, leaving my hometown of Punta Gorda and its neighboring communities in disrepair. As recovery efforts continue, the renovation of my condo has been stalled due to a failure by our association to reach an agreement with…
Last week, I stumbled upon the Tour de France while aimlessly flipping through TV channels. This annual professional bicycle race is highly esteemed and considered one of the most difficult events in the sport. Watching it was thrilling. The competition was captivating, and the incredible athleticism of the…
When dealing with health issues, does when you were born matter? For those living with hemophilia, the answer is a resounding yes. Having personally experienced the challenges of living with bleeding disorders and survived multiple life-threatening situations, I can’t help but reflect on how different my medical journey might…
The pain that accompanied my periods was excruciating, exacerbated by my two bleeding disorders, hemophilia B and von Willebrand disease. I vividly recall my gynecologist explaining that during a bleeding episode, the severity of my clots and bleeding was comparable to giving birth during menstruation, and thus it…
Recent Posts
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study