Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…

My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…

I recently attended a webinar called “Impact of Factor 8 on Bone Mineralization,” sponsored by Factor My Way, a patient support program. It featured Claudio Sandoval, MD, who has over 30 years of experience treating people with bleeding disorders and is passionate about bone health, an often overlooked aspect of…

Well over 70% of children with severe hemophilia born in a region of Italy in the last 20 years were to women without a family history of the disease, data from a registry analysis show. “Our data highlight the importance of genetic counselling, especially in families with apparently sporadic haemophilia cases,…

I’ve been dating for nearly 40 years, and consider myself somewhat of an expert. Valentine’s Day feels like the perfect opportunity to impart my experience and wisdom. One thing is certain: Dating with hemophilia and von Willebrand disease is like a box of chocolates — you never know…

People with hemophilia may be less likely to develop cardiovascular disease (CVD) — disorders of the heart and blood vessels — according to a study from the U.K. and the Netherlands. “A lower-than-predicted [cardiovascular disease] incidence was found, supporting the theory that hemophilia protects against CVD,” the researchers wrote.

Last Sunday, my oldest son came to town for a photoshoot. He hopes to build a strong website presence so that directors and casting agents consider him for future projects in musical theater. We made plans to eat lunch before meeting with the photographer. My youngest son joined me, and…

More than 80% of the men with severe hemophilia A treated with the investigational gene therapy Roctavian (valoctocogene roxaparvovec) in the Phase 3 GENEr8-1 trial remained bleed-free two years later, and nearly all were off standard preventive therapies. These findings were among new data presented at the recent 15th Annual…

Heart disease is the No. 1 killer of women. Yet all of the studies I found on hemophilia and heart disease have studied only men. But essential lessons for women are in these studies, too. Today, National Wear Red Day, which symbolizes support for women’s heart health,…

A sealed jar that no one can open. A faucet attachment that’s been screwed on too tightly. A piece of furniture that needs to be moved. These are just some of the problems we encounter at our home on a regular basis. And the one person who can solve them?…