Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…

“Pain” is a short, four-letter word, but its meaning is complex for those affected by chronic illness. For example, my youngest son, who lives with severe hemophilia, also known as factor VIII deficiency, once described the feeling of an internal bleed as sharp needles continuously attacking a joint.

The first participant has been dosed in a Phase 1/2 clinical trial evaluating marzeptacog alfa activated (MarzAA) to treat bleeding episodes in patients with factor VII (FVII) deficiency, Glanzmann thrombasthenia, and hemophilia A with inhibitors receiving treatment with…

First in a two-part series. I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply…

For boys and men with moderate to severe hemophilia, switching to extended half-life (EHL) products is linked to a reduced number of infusions and a sustained low rate of bleeds, according to a  real-life, multi-center study in Canada. Notably, a significant drop in the annualized bleeding rate (ABR)…

Successful immune tolerance induction (ITI) — a type of treatment that aims to re-educate the immune system to prevent the formation of inhibitors, or neutralizing antibodies targeting clotting factors — was associated with lower treatment costs in hemophilia A patients with inhibitors, a study in Brazil reported. Conversely, treatment…

The U.S. Food and Drug Administration (FDA) has approved an update to the prescribing information for Altuviiio (efanesoctocog alfa), a long-lasting factor VIII (FVIII) replacement therapy for hemophilia A, to include the full results from a clinical trial, the XTEND-Kids study. As requested by Sanofi, which markets…

I’ve generally had an all-or-nothing mindset when it comes to working out. In the past, anything under 30 minutes would feel like a waste of time. The problem with my fitness regimen has been sustainability and consistency. However, I’ve found that starting slowly and gradually building up has been effective…

Change is inevitable — like it or not, it’s a part of life. The seasons change and bring a crispness to the air or warmth after the bitter winter cold. Jobs change and we are given new responsibilities and challenges. Change happens throughout our lives, and we must move forward…

In observance of Bleeding Disorders Awareness Month, the integrated infusion therapy provider BioTek reMEDys is calling attention to the importance of safe treatment use and education among people with conditions such as hemophilia and von Willebrand disease. Each March, the bleeding disorders community and supporters seek to heighten…