Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can…
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…
As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the…
My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…
In the marketing world, we have a concept called the elevator pitch. An elevator pitch is a short, persuasive speech delivered in the time it takes to ride an elevator, hence the name. The goal of an elevator pitch is to quickly and effectively communicate a person’s ideas, product, or…
As a person with von Willebrand disease (VWD) and hemophilia, bruises have been a near-constant presence in my life. VWD and hemophilia are bleeding disorders that affect the body’s ability to form blood clots and stop bleeding. Both can cause spontaneous and excessive bleeding, including bruising, heavy…
I’ve learned to expect the unexpected when dealing with my bleeding disorders. A few days ago, I took a bike ride with my twin nephews who were visiting from Wisconsin. My small city of Punta Gorda, Florida, has a great bike loaner program. Bicycles, tricycles, and handcycles are available…
In September, I decided to revamp my pathetic and inconsistent fitness routine. In a moment of desperation, I ordered a Peloton bike. I needed to lose weight and was out of shape. Not a good feeling. With my bleeding disorders, walking causes my foot and knee to swell. I…
Last year, I met Kayla Mack through a Facebook group for people with von Willebrand disease (VWD). Kayla has type 3, a severe form of the condition. She reached out to the group for help after a terrifying visit to the emergency room. She wrote, “I’m getting very afraid…
Christmas season has always been stressful for me. I live in Florida, but my family lives in the arctic tundra of Illinois and Wisconsin. I can’t understand why my mom and I travel north instead of having everyone come to us in sunny Florida, but as I often say, “It…
Last week, I set out in my car to donate some household items to Goodwill. I’ve been there probably a dozen times, but this time I drove past the Goodwill building twice. Why? Because my community is missing signs. All kinds of signs. Street signs, building signs, and even stop…
Stephanie was my foster child in the ’90s. She was the cutest little girl on the planet. With curly, bright-red hair and freckles, she had a charisma and charm that were hard to ignore. Stephanie was born with HIV, the virus that causes AIDS. She developed full-blown AIDS when she…
Hemophilia is a rare bleeding disorder. It leads to uncontrolled bleeding, hospitalizations, doctor visits, and the need for expensive medications. Bleeds result in costly absences from work and school. Receiving care at a federally funded hemophilia treatment center (HTC) is essential. Most hematologists focus on blood cancers or…
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