Patients sharing their experiences for mutual support and advice.
Connecting patients and their families to share their experiences of life-changing diseases: symptoms, treatments, relationships, sources of support, can help this transition to a new life. Sharing data (treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life) can help patients find what is most effective for them in handling their problem, and provides a rich and growing resource for use by medical researchers.
Stephen Heywood was diagnosed with ALS (also known as Motor Neurone Disease) at the age of just 29. A devastating debilitating condition, less than 4% of sufferers survive more than 10 years: Stephen was 37 when he died. In those eight years, he and his family searched for any new treatments, often operating an agonizingly slow trial-and-error basis. They concluded that for Stephen, and for thousands of others suffering from ALS, there had to be a better way.
Ben and James, Stephen’s brothers, founded Patients Like Me in 2005, a little more than a year before he died.
The community quickly flourished, their team grew, and communities for a whole range of other life-changing conditions were added: by 2009, they had 45,000 active members. By late 2013 the site had 200,000 plus members, with references to over 2,000 conditions: the original ALS network, now with 4,500 members, is the largest of its kind in the world.