I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…

Mistakes can be costly. The damage of a single mistake can cost a few dollars or an entire livelihood. In an ideal world, we’d learn our lessons before we had the chance to make any mistakes. That way, we could avoid ever making them. It’s like going to school,…

Jim Christensen Jr., a hemophilia A patient who has supported the National Hemophilia Foundation (NHF) for more than three decades, has received the Lester A. Rosen Humanitarian and Achievement Award, given annually by Ameritas, for which he is an independent financial representative. With the award, the insurance company…

Chronic pain and a reliance on pain killers remains high among adult men with severe hemophilia B after two years on preventive treatment with extended half-life recombinant factor IX — even with a lesser bleeding frequency and fewer repeated joint bleeds, a real-world study from Ireland reports. These findings…

Many years ago, when my youngest son was 11 months old, he was hospitalized during the Christmas season due to hemophilia complications. We enjoyed the different community groups, such as performing arts groups, school groups, and church ministries, that came to share a tiny part of the holidays with…

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to GENV-HEM, GeneVentiv Therapeutics’ investigational gene therapy for hemophilia A and B patients, with or without clotting factor inhibitors. Orphan drug designation is given to treatment candidates that have the potential to be safe and effective…

I love a good laugh. When things are terrible and the world seems to be imploding, a well-timed joke or story can completely change the direction of the day. I am grateful to live in a home that is filled with love and laughter. I can count on…

For some patients with moderate or severe hemophilia, switching from standard to extended half-life replacement therapy results in improvements in key outcome measures, a study in Canada found. Most of these self-reported gains in health-related quality of life, and physical, mental, and social functioning three months after the switch,…

Hemophilia patients experienced improvements in joint health, mobility, and overall quality of life after completing a supervised eight-week exercise program, a study reports. However, in order to achieve long-lasting benefits, regular exercise may be required. The study, “Effects of a supervised therapeutic exercise program on musculoskeletal health and…

I live with depression, anxiety, and chronic pain, and I rely on talk therapy at least once a month to keep my emotional well-being in check. The process of talking through my emotions and trusting a professional to give me new perspectives on the issues I deal with brings…