challenge
Patients sharing their experiences for mutual support and advice.
challenge
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.