High drug costs: the tale of 4 women
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 [...]
1983: The 35th Anniversary
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 [...]
How We Get Scientific Answers
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! [...]
No More Martinis For Me
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 [...]
How Martinis Led to my Rare Disease Diagnosis
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 [...]