In a recent blog post on the Hemophilia Federation of America’s (HFA) website, HFA board member Joe Markowitz, 73, who has hemophilia, shared his perspective. He believes that life today is favorable for those with hemophilia, and he encouraged young families to overlook what he perceives as the…

Oh, my goodness! My youngest son, Caeleb, is preparing for a wonderful senior year of high school. It seems like yesterday my wife and I carried him home from the hospital as a baby and dove into uncharted waters regarding his hemophilia diagnosis. So far in my son’s…

Despite the COVID-19 pandemic, Catalyst Biosciences has successfully completed a Phase 1 trial of marzeptacog alfa activated (MarzAA), with results supporting the treatment as an on-demand option for bleeding episodes in people with hemophilia A or B. The study, MAA-102 (NCT04072237), was designed to assess…

A hemophilia diagnosis takes a toll on the social and mental health of men, who often feel misunderstood and excluded from activities such as sports, a Canadian interview-based study reports. While blood-clotting replacement therapies have improved quality of life, they can also be costly. Study participants highlighted the need…

Most women of childbearing age have normal monthly periods. For women like me with bleeding disorders, monthly periods are a “shark week event” with horrific bleeding and pain. The pain made me sweat, shake, and vomit. The severe bleeding had other consequences: I was iron-deficient, anemic, and exhausted. After work,…

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…

I consider myself a high-functioning adult. Living with depression, anxiety, and chronic pain brings quite a few challenges, yet I manage to keep moving. Add my son Caeleb’s bleeding disorder, and life can prove interesting. While managing our chronic conditions, I find that I rarely ask for…

I have begun the year on a high note: I can park both cars in my garage. My family pitched in to help with a clear out. We tossed things we no longer need and donated useful items. It was a fantastic feeling to get rid of the things that…

Online shopping is one of my guilty pleasures. In fact, as I write this column, I may have spent a significant fraction of the day swiping through hundreds of pages of items on my favorite shopping app. I don’t always end up ordering every item I find — I simply…