“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe.After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis.He read that the median survival for his condition was just 24 weeks from diagnosis.Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.
Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support.For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data.He argues that only with complete data can a patient crack the code on his or her own health situation.As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.
To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below. (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” – another core value of our company. Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)
Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment. “The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,'” he says. “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment. And when my side effects hit– the first was uncontrollable chills and shaking– I knew what is was. I knew what to expect, and I knew how other patients like me had gotten through it.”