Dear Newly Diagnosed Sister, Welcome! You are now part of a supportive community full of love, courage, and inspirational superheroes. Always remember that you are not alone. I was diagnosed with von Willebrand disease and hemophilia B in 1975, at age 10. Your diagnosis Diagnosis of…

The Hemophilia Federation of America (HFA) is now offering a “clinical trial finder” to help people with hemophilia and other bleeding disorders more easily connect with the studies they are eligible for. The platform enables visitors to search across all clinical trials, regardless of sponsor, for key…

The U.S. Food and Drug Administration (FDA) has lifted the hold on clinical studies with fitusiran, an investigational therapy for hemophilia, Alnylam Pharmaceuticals announced. “We are pleased with the FDA’s decision to lift the clinical hold, as fitusiran holds the potential to help improve the lives of people…

As a “HemoWife,” I’ve become intimately acquainted with the intricate dance between physical and mental health. In recent columns, I’ve delved into the journey of navigating my husband Jared’s hemophilia alongside my own anxieties and explained how the two are connected. But mental and physical health are related…

I have been part of the bleeding disorder community for over 20 years. The early days were filled with fear as I learned about hemophilia with my newborn son. Over time, I began to feel a little more comfortable with this rare genetic bleeding disorder. I wanted…

The National Hemophilia Foundation (NHF) kicked off its 70th anniversary with an advocacy effort on Capitol Hill in Washington, D.C. At the same time, the NHF launched its 2018 Red Tie Campaign  to raise awareness about Bleeding Disorders Awareness Month and reinforces its campaign to oppose the U.S. Congress’ efforts to terminate…

My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours…

There’s a freedom children have when they swing. Sometimes they need a little push, but before long, they learn how to push themselves. The sounds of chains squeaking and shoes scraping the dirt are imprinted in my mind. Swinging higher and higher is always the goal. Hair flies in the…

I love making quilts. Some people wonder why anyone would buy new fabric just to cut it up and sew it back together. It might sound odd, but for quilters like me, creating something by hand brings comfort, joy, and satisfaction. There is a rule when preparing to make…

If I had to define my self-quarantine in one word, it would be peace. I live in a peaceful, small, rural town. My street is quiet and my porch has a wonderful view. Three of us are at home — my husband, one of my sons, and me. My…