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Social Media Site Connects Patients Suffering From Similar Illnesses

Evening Edition

Aired 6/17/14 on KPBS Midday Edition.

Social Media Site Connects Patients Suffering From Similar Illnesses


Jamie Heywood is a co-founder of PatientsLikeMe and founding director of the ALS Therapy Development Institute


Health professionals find that people dealing with chronic illness do better when they have a network of support. However, sometimes patients learn that friends and family have their limits: there's just so much they can say or empathize about an illness they don't have.

The social media site PatientsLikeMe was started to build connections among people who are dealing with the same kinds of illnesses. And some say it's one of the ways technology could be transforming the future of healthcare.

Jamie Heywood, co-founded the site with his brother Ben. The two started it as a way to help their other brother Stephen who was diagnosed with ALS, also known as Lou Gherig's Disease, which has no cure. Stephen died in 2006.

Heywood said he and Ben were not able to save Stephen from ALS, but PatientsLikeMe does have some success stories.

One of those stories involves Letitia, who has had epilepsy for 31 years. Through the site, Heywood said Letitia was able to connect with other people with epilepsy and learned about a surgery that could help her. Now, Letitia is living a more independent life. She's even driving.

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