When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there. She told me I was the perfect choice because I understand hemophilia, its treatment,…

Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…

Sangamo Therapeutics recently presented what it characterized as key improvements to its technology platform for engineering highly specific zinc finger nucleases (ZFNs), which are used for targeted editing of the human genome. This technique has broad applicability, namely for the treatment of hemophilia B and other disorders. The…

Health insurance is largely effective for Chinese patients with rare diseases such as hemophilia when it comes to being able to utilize healthcare services and buy medication. However, affordable and accessible treatment is still lacking and there is still a need for improvement in diagnostics and treatment of these rare…

I’d enjoyed several months without any bleeding problems until I experienced an unexpected ankle bleed last week. The elevator at my condo was out of service, so I had to climb four flights of stairs multiple times a day, which put additional strain on my joints. Just when I…

An upcoming episode of the TV series “Advancements,” hosted by Ted Danson, will be dedicated to current and future research and therapeutics for inheritable bleeding disorders. The new episode will feature work developed by the National Hemophilia Foundation (NHF) and explore the non-profit’s programs in bleeding diseases, such…

Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…

Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…

With all the issues surrounding the new coronavirus, I can’t help remembering about 15 years ago when we faced the possibilities of a medical shortage in the bleeding disorders community. A shortage of factor VIII meant that many in the hemophilia population faced a lack of medicine to…

Earlier this week, my youngest son, Caeleb, and I parked my car and walked to the financial aid office at the University of New Mexico, where he’s a freshman. As we walked, we talked about him registering for the spring semester. He expressed concern that he wouldn’t get into the…