Hemophilia and Me – a Column by Jennifer Lynne

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…

Dear Hemophilia Dad, I am writing to you today to protect the health of your beloved daughter. Trust me, I know the struggles you encounter daily. In my mind, you are a superhero. Your daughter is at risk for hemophilia, too. She is a carrier and needs testing…

Kendall Fitzpatrick and I have much in common. Like me, she has hemophilia B and von Willebrand disease. She’s a registered nurse, works for a specialty pharmacy, and is an outspoken advocate for women with bleeding disorders. She lives in New Kent, Virginia, and is mother to a…