Top Docs 2008 Part II: What to Know

Web-Exclusive: Patients Like You

How one Massachusetts woman is connecting with people worldwide with unique expertise in her illness.

The brainchild of three MIT engineers, Cambridge-based PatientsLikeMe is an online community that allows patients with “life-changing” illnesses such as HIV/AIDS and multiple sclerosis to post profiles showing their symptoms, treatments, and progress. Here, site member Marla DeVane of Upton (screen name “Ladyhawk”) shares her experience in linking up with fellow Parkinson’s disease sufferers.
 
• “When I was diagnosed with Parkinson’s in July 2007, I didn’t know anyone else who had it. So I went to the first online forum I could find to ask some questions. That’s where I met Karen, another PD patient, who a month later introduced me to PatientsLikeMe. Her friendship and encouragement eased me in.”

• “I like that I can keep an objective record of my illness on the site. I can’t control the disease, but I can watch its progress and control the treatment—which meds are working, which ones aren’t. Also, the online forum offers really specific (and fast) feedback: In the morning, I can ask if anyone else is starting to take a certain drug; by that afternoon, I’ll have 15 to 20 responses describing other people’s experiences with it.”

• “Being on the site has affected my treatment directly. For example, someone posted about mirtazpine, which is used to treat high blood pressure but also might also be effective for Parkinson’s. I took the information to my PCP—after checking it out, he put me on it. The more brains and eyes you have looking at stuff, the better.”

• “All of us on the site have our own diagnosis, our own symptoms, our own way of coping with the disease, but the fact that we each have PD unifies us. It puts us in the same family. There is strength in togetherness, whether it is in real honest-to-goodness meetings or online.”