When Marcia Watson-Levy was diagnosed with breast cancer in 1997 at age 58, she suspected that heredity played a role: Her sister Rhoda had died of breast cancer 12 years before, at 52. Yet Watson-Levy, who then lived in San Francisco, said that none of her physicians — her primary doctor, her surgeon or her…
An email popped up in Hershel Richman’s inbox. “Your new personalized risk report is now available through the CPMC web portal!” the email cheerfully informed him. Its contents were tactfully vague: some talk of “genetic counselors” and a medicine collaborative. But this wasn’t some credit report spam, or a Nigerian phishing scam. No, Richman, a…
For three days in April, about 70 families whose lives have been upended by Tay-Sachs disease gathered in San Diego for the annual National Tay-Sachs and Allied Diseases conference. The event — which attracted families caring for children with Tay-Sachs, as well as those who have lost loved ones to the degenerative disease that claims…
When Jennifer was 26, people started asking her why she was limping. An exercise enthusiast, she brushed aside the question. Then she noticed she couldn’t run laps in her kickboxing class. No problem, she thought — running wasn’t her thing. Next, she started falling behind some older women in Pilates class. By that time, she…
Growing up can be hard under the best of circumstances. But try sharing with a friend your most intimate problem, one you secretly confront every day: that you live with a disease ravaging your waste disposal system. It’s a lonely journey, according to interviews with young people affected by Crohn’s disease or ulcerative colitis, collectively…
Entering the Hummus Bar in midtown Manhattan, I knew this was going to be the most challenging moment of my weeklong gluten-free experiment. I’ve been in love with hummus for years. When I lived in Tel Aviv, at least three times a week I ate a plate of the chickpea dish for lunch. I never…
How shall I put this delicately? When we speak about the work of our gastrointestinal tract, which we rarely do, we use euphemisms. Nevertheless, I will plunge into precarious territory by being frank: I never had a friendly relationship with the toilet. From early childhood, my stool looked like hard pebbles. I was chronically constipated…
Here is a list of institutions that provide treatment, support and testing for Jewish genetic diseases. Bachmann-Strauss Dystonia & Parkinson Foundation 551 Fifth Avenue, Suite 520 New York, NY 10176 (212) 682-9900 www.dystonia-parkinson.org Bachmann-Strauss Dystonia & Parkinson Foundation funds scientific research seeking to understand the causes of and find potential cures for the movement disorders…
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