If you like thrillers, you’ll love this article. If you like thrillers within thrillers, you’ll like it even more: https://www.nytimes.com/2009/08/18/health/18tran.html?pagewanted=1&_r=1&ref=health
Of course, if you were Jessa Perrin and had Wilson’s Disease (link to https://digestive.niddk.nih.gov/ddiseases/pubs/wilson/) — which affects only one in every 30,000 people — or one of her loved ones, this would be a lot more than an adventure. It would be a true life and death story. And you’d be eternally grateful to the doctors who performed a little-used procedure that saved Jessa’s life, so that she could live long enough to have a liver transplant.
This story has a happy ending. Jessa had the best medical care available. That’s not true for most people who have a rare disease. Those of us who are touched by Jessa’s story can help make sure that others get the same care that she received by advocating for better health care for all Americans.
-Jonathan Jacoby