High drug costs: the tale of 4 women

By |2019-03-01T01:00:52+00:00February 27th, 2019|Health, High Drug Costs, Rare Disease, Wilson Disease|

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 [...]

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How We Get Scientific Answers

By |2019-05-13T14:47:40+00:00August 4th, 2018|Health, Medical Study, Patient Registry Study, Rare Disease, Wilson Disease|

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 [...]

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How a Chance Conversation Led Me to a New Treatment

By |2018-08-27T21:32:43+00:00March 2nd, 2018|Health, Rare Disease, Wilson Disease|

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 [...]

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It’s Penicillamine, Not Penicillin!

By |2018-10-01T14:56:50+00:00March 1st, 2018|Health, Rare Disease, Wilson Disease|

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 [...]

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Rare Disease is Not Rare

By |2018-08-27T21:31:08+00:00February 28th, 2018|Health, Rare Disease, Wilson Disease|

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 [...]

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No More Martinis For Me

By |2018-08-27T21:28:41+00:00February 27th, 2018|Health, Rare Disease, Wilson Disease|

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 [...]

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How Martinis Led to my Rare Disease Diagnosis

By |2018-03-09T21:50:57+00:00February 26th, 2018|Health, Rare Disease, Wilson Disease|

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 [...]

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Wilson Disease

By |2018-02-27T18:42:46+00:00May 17th, 2017|Health, Rare Disease, Wilson Disease|

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 [...]

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