Many hemophilia patients experience undiagnosed symptoms of depression and anxiety that can impact their ability to cope with the disease and to adhere to treatment, a U.S. survey says. These findings shed light on psychological factors that affect the course of the disease, but with dedicated management and follow-up, depression…

Many times, I find myself overwhelmed by the weight of my responsibilities, particularly when it comes to managing issues related to my sons’ hemophilia. The stress from different directions can be paralyzing, and I often grapple with anxiety about how to handle everything at once. The burden…

Parenthood has transformed my husband, Jared, and me in many ways. We’ve had to be responsible for a lot of things. We must look after our daughter, Cittie, as well as our home, our health, and our relationships with each other and other people. When I was younger, I used…

I’ve been cleaning up my computer files and finding pictures everywhere except where they are supposed to be stored. One photograph caught me by surprise. My mighty warrior, Caeleb, went to a monster truck rally in 2014. He took a great picture with the driver of the monster…

Three patients who received SPK-8011 — a gene therapy developed by Spark Therapeutics — for hemophilia A show increased production of clotting factor VIII without any safety issues reported, says the company. The patients are the first to receive the treatment as part of a Phase 1/2 clinical trial, with…

In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.

Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Baudax Bio’s investigational regulatory T-cell therapy TI-168 for the treatment of hemophilia A with inhibitors. Orphan drug status is given to therapies intended to treat rare conditions, defined as those affecting less than 200,000 people in…

Feet and ankle problems are common for people with bleeding disorders, including hemophilia B and von Willebrand disease. As someone living with these conditions, I’m no stranger to these challenges. I recall a trip to Disney World when I decided to wear a pair of Birkenstocks for…

The Hemophilia Federation of America (HFA) has been awarded a $250,000 research grant through the Eugene Washington PCORI Engagement Awards Program to support the HFA’s PRIDE Project through training and education of bleeding disorder community stakeholders, including the hemophilia community. The Awards Program is an initiative of the Patient-Centered…