In 2005 Arturo Porzecanski, an accomplished economist, developed a life threatening and often fatal disease called "systemic capillary leak syndrome." I'd never heard of this rare condition, in which there are sudden episodes of leakage from tiny blood vessels and a precipitous drop in blood pressure. Porzecanski was left with muscle loss after his first episode and was told that the next one might kill him. He "was very depressed and felt increasingly alone" until he found RareShare, a website whose purpose is to foster contact between people who, like Porzecanski, have rare diseases.
In my clinical practice I often referred people with significant psychiatric ailments to organizations like NAMI (National Alliance on Mentally Ill) or the Depression and Bipolar Support Alliance for opportunities to meet and hear from others with similar conditions. For many people organizations like these provided emotional support and sometimes "tips" on coping with symptoms like hearing voices or depressive hopelessness.
But for rare conditions like what Porzecanski has - the Mayo Clinic has seen only 28 cases in 25 years - the isolation can be debilitating. Despite a supportive family he felt very alone. Here's what Porzecanski says about the new website:
"RareShare put me in touch with other patients. It gave me great pleasure to put down everything I knew: all the critical articles, the world's experts, information about custom shoes. For me there was just a lot of support in knowing I was not alone."I browsed on the website. It's obviously young. Many of the "communities" have just one or two members, and not all have generated real discussions. But some, like the systemic capillary leak syndrome "community" that Porzecanski started, have the beginnings of a rich and meaningful exchange. Some, not surprisingly, have energetic reports of what to me sound like quack ideas. But that's part of human life and not peculiar to the web.
Insofar as the web and portals like RareShare facilitate creation of virtual communities in which people can "meet" others with the same condition to exchange ideas and mutual support it is all to the good. It will be important for doctors and nurses to learn about these new resources and how to counsel patients about using them.
But I fear the risk of corruption of these grassroots enterprises by commercial interests. This has already happened enough to elicit a new term - "astroturf" - for pseudo grassroots organizations driven by corporate support such as pharmaceutical companies that want to market high cost drugs for the condition. (See here for an example of astroturf I wrote about in 2007.) I hope that RareShare's business plan does not involve selling the soul of person-to-person exchange to the highest corporate bidders. If it's able to resist corrupting temptations it could make a meaningful contribution to human well being!