Blood visibly present in urine — called macroscopic hematuria — considerably increases the risk of hypertension in hemophilia patients with a family history of high blood pressure, and is not a “benign” condition for this patient group, a study reports. The study, “Macroscopic hematuria as a risk…

Hemgenix (etranacogene dezaparvovec), the first and only gene therapy approved for adults with hemophilia B, has won this year’s Prix Galien USA award in the category of Best Product for Rare/Orphan Diseases. The award — the nation’s top prize for leading-edge advances in life sciences — was received…

Baby Cittie turned a month old on Feb. 18. I’ve noticed that her leg has sported a largish gray spot resembling a bruise since birth. Although it has faded, it still hasn’t gone away entirely. As a first-time mom, I am naturally paranoid. I notice…

The past two weeks have been especially busy as I produced and directed the musical “Honk! JR.” in my community. Many children who’ve worked with me for years participated in the production. I can’t count the number of children’s theater programs I’ve directed over the years, but I do…

Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You are not alone. Coping with hemophilia day in and day out, as a patient or a…

The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophilia patients and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising The plan focuses on all…

I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…

My oldest son, Julian, called me last Saturday evening with exciting news. He successfully auditioned to sing in a cabaret with a New York-based theater group. He’ll perform a solo at a West 34th Street theater near Times Square on June 26. I could feel the excitement through the phone…

Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…

Fear. Millions of people are living with insane amounts of fear due to the outbreak of the COVID-19 virus. This includes fear that the food supply will be limited, fear of catching the virus, and fear of lost income. There is a lot for our world to fear. But…