I’ve spent my career reporting medical news. It’s an important topic to me because I live with my own health challenge: A rare, genetic condition called Wilson disease that allows copper – an essential dietary mineral - to build up in the [...]
In 2016, Berna Heyman testified before a U.S. Senate committee about her personal experience with sudden and dramatic increases in drug prices. She was forced to switch drugs to treat her chronic genetic disease, which was not the ideal option for her. “The only [...]
This is the 35th anniversary of 1983 – an important year in my life. And, for anyone living with a rare disease. It was a year full of historic landmarks, too: the introduction of the first cell phone; the release of Michael Jackson’s single, “Thriller”; [...]
I've read and reported on scientific studies for my entire career, and now I'm finally getting my chance to be a part of one. It's a patient registry study for Wilson disease! Medical studies yield the information doctors rely on to diagnose our diseases. They [...]
You never know when a chance conversation will change the course of your life. It was the year 2000, and I was attending the International Health and Medical Media Awards, better known as the FREDDIE'S, in New York City at the Pierre Hotel. Attending the [...]
You've heard of penicillin, right? It was one of the first antibiotics – and is still one of the most widely used. It has saved millions of lives since it was discovered, accidentally, in 1928. But how about penicillamine? When I tell people that my [...]
When was the last time you felt competitive? My last time surprised me, because it was at my book club. It wasn’t about that month's book selection – rather, it was when I told my book-loving girlfriends about the book I’m writing, on the rare [...]
Imagine practicing medicine without the internet. In 1983, doctors relied on the medical books in their office or a nearby medical library for reference. Medical journals describing new scientific studies arrived through the mail. Then as now, they relied on knowledge remembered from medical school [...]
The night I drank my first martini would also be my last. My husband says the martinis saved my life. I’m not sure about that, but by the end of that weekend my life was forever changed. I went from believing I was a healthy [...]
I’m excited to introduce the topic of Wilson disease on my blog in order to raise awareness and understanding of this rare disease. The following post is reprinted with permission from my daughter, Schyler who wrote it for her Middle School biology class. I couldn’t [...]
