hereditary disease

Life with Cystic Fibrosis: Three Teenagers’ Perspectives

4 Comments / Patient Experiences / By

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets. What exactly is […]

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I Will Not Be Quiet: An Interview with ALS Advocate Debra Quinn

4 Comments / ALS / By

Debra Quinn’s father, sister, aunt, grandmother and great aunt all passed away from ALS, and in 2009, she was diagnosed with ALS herself.  This hereditary form of the disease is called familial ALS (fALS). After the loss of her younger sister in 2007, Debra decided that she could no longer stay silent.Today, she is “the

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