Posted by admin | August 6, 2012
“It’s only when you really get into the experience of being a patient with a life-changing illness, where you’re dealing with the uncertainty and the process, that you start to learn things. You start to learn that the experience you’re going through – the pain you’re suffering, or maybe a side effect or something that worked – will never benefit anyone else because no one’s writing it down.” – Jamie Heywood
Recently we’ve shared two great interviews conducted by our partner Patient Power: one with psoriasis patient Lissa and another with multiple sclerosis (MS) patient Marcia.
Today we’d like to share another interview conducted by the always thoughtful Andrew Schorr of Patient Power. This one features PatientsLikeMe Co-Founder and Chairman Jamie Heywood, and it delves into some very interesting questions about the concept of personalized medicine. Why are patients willing to share their data? Can the Internet expedite clinical discovery? What can patients contribute if they are considered full partners in the health care system? Find out that and more in this insightful discussion.
Posted by admin | June 4, 2012
“I don’t really know too many people around here with psoriasis. It was hard to relate with somebody. My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do. It’s really important to be able to connect with people who truly understand what you’re going through.”
– Psoriasis Patient Lissa
In March, we introduced you to Lissa, a psoriasis patient who had recently started blogging about life with this chronic skin condition. At that time, she had begun UVB photo therapy treatment for her psoriasis.
Now, several months later, you can see how Lissa is doing after completing her 51st UVB photo therapy session – and how PatientsLikeMe continues to play a role in her wellbeing – in a Skype video interview with our partner Patient Power, a site dedicated to connecting you with the experts on your condition. That means doctors and patients.
Lissa Conger: Managing Psoriasis and Harnessing the Power of Patient Communities from Patient Power® on Vimeo.
Check out Lissa’s engaging interview with Patient Power founder Andrew Shorr, a leukemia survivor, above. And stay tuned for more Patient Power videos featuring PatientsLikeMe members – including patients with multiple sclerosis (MS) and cancer.