I had previously heard about the term health anxiety obsessive-compulsive disorder (also known as hypochondriasis or illness anxiety disorder), so one day I decided to research its symptoms. Frequent visits to doctors and the emergency room, seeking reassurance that you are not ill from physicians, friends, and family, and…
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A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their medical team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website and…
First in a series. Some people in the bleeding disorders community seem like they’re larger than life — not because they seek attention, but because their lives intersect with so many pivotal moments in our shared history. Lee Hall is one of those people. I know Hall through his advocacy…
Today my hematologist complimented me. She told me that, had I not persevered, I may have only been labeled a “carrier” and my bleeding disorder may not have been adequately understood. For me to be healthy, it is critical that my bleeding disorder is understood. My hemophilia…
Sometimes I am overwhelmed when I think about the hemophilia journey my sons are traveling. My first memories about this date to June 1996, when my first son, Julian, was born and diagnosed with severe hemophilia A. The early days of learning how to access a port, and later,…
When someone has a hemophilia diagnosis, they receive treatment in one of two ways: on demand, in which they are given products to help their blood clot after an injury or before a scheduled medical procedure; or prophylaxis, which…
Raising two sons with severe hemophilia A has been a journey filled with ups and downs, joys and fears. I lived in constant fear when my first son, Julian, was a baby. Not only was I concerned about feedings, diaper changes, and making sure he was breathing in…
Several members of my family are diehard Purdue University basketball fans. This year was particularly exciting for them due to Purdue’s performance in the recent NCAA basketball tournament. During a gathering at their house on Easter Sunday, which included watching an important March Madness game, I gained insight…
Columns
Welcome to ‘Hemophilia and Me’
Welcome to “Hemophilia and Me.” Former Hemophilia News Today columnist Shellye Horowitz, who wrote “The Forgotten Factor,” inspired me to dust off my journalism degree and share my own story, and now I’m grateful and honored to join a team of inspirational rock star writers. I plan…
The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d fly through the air with the greatest of ease/ That daring young man on the flying…