Scrabble, the classic word game that has enthralled generations, is a captivating blend of strategy, vocabulary, and skill. I began playing competitively in 2010. At best, I am a mediocre player, but I love the game and am grateful for my connection to the Scrabble community. For me, Scrabble has…
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 don’t see blood, so you must not be bleeding.” For people with bleeding disorders, that kind of thinking isn’t just frustrating; it can be dangerous. Bleeding isn’t always visible or dramatic. It doesn’t always look like blood pouring from a wound or a bruise that appears immediately. For…
The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease. Mild hemophilia is distinguished…
In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…
Physical therapy (PT) plays a crucial role in the management of hemophilia. While it may seem counterintuitive for people with bleeding disorders to benefit from physical activity, PT is essential for overall joint health and pain management. However, my recent journey tells a slightly different tale. It’s a story…
In 1975, when I was diagnosed with hemophilia B and von Willebrand disease, my dreams of participating in sports were soon shattered. I was barred from dance, cheerleading, and even gym class. My high school’s athletic director also barred me from joining the varsity swim team, concerned…
Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…
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…
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…
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