Patient Web sites aren't just found on services set up to host them. And, I think there are more benefits not covered in the artcle. I have an extremely rare genetic condition called Hermansky-Pudlak Syndrome. It's a rare type of albinism that also causes a bleeding disorder and in my case a Crohn's-like colitis and pulmonary fibrosis. Several of us HPS'ers now have sites, and each one has a different flavor. Mine has become a sort of defacto news site for the HPS community. Others are more personal in nature. Yes, it allows me to tell extended family and friends how I'm doing. It also, however, allows me to document in a personal way what it's like to live with a syndrome most doctors will never know about. It gives us as patients with rare diseases a voice to express our unique experiences. And, it can give hope and a realistic outlook to those newly diagnosed wantng someone else to relate to. My site is at: www.heatherkirkwood.blogspot.com.
Coping With a Health Crisis, One Click at a Time
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"Outside the hospital intensive care unit, there was one pay phone for 40 families," recalled Langshur, 44. "Not that anyone wanted to make all those calls."
Within days of Matt's birth, Langshur's brother had posted a Web page.
"It became this viral community," recalls Langshur. "By the time of Matt's last surgery we were using it to communicate with thousands of people worldwide."
CarePages now boasts 3 million members around the globe; CaringBridge users have logged half a billion Web site visits and 13 million messages.
It's easy to see why. Creating a private Web page takes less than five minutes. Patients can quickly post details of their situations and invite others to join in. Within days — or hours, in some cases — the reach of the Web takes over.
Between the time Samantha Crowell was admitted to a Seattle hospital for cancer treatment in April 2006, and the time she got to her bed, hundreds of people already had posted to the teenager's CaringBridge site.
"That whole night and the first day, we were in the thousands," recalled Lisa Sibert, 42, Sammi's mom. "I check on them daily. To me, it's been one of the most important pieces of the journey."
Healing power of connection
When Katie Pagano's parents posted details of their toddler's cancer diagnosis on CaringBridge two years ago, 10,000 hits were logged in the first week.
"It helped both myself and my wife to know people cared and would write," recalled Matt Pagano, 40, a chiropractor in Torrington, Conn. "There were people we had never met who wrote to say 'I'm saying prayers for you.'"
That connection is important to anyone struggling with serious, long-term illness, experts say. Isolation and depression are common as time in the hospital takes its toll.
"Social support is very important. It's been shown in hundreds and hundreds of studies it's an important component of care," said Michael Feuerstein, a psychology professor at the Uniformed Services University of the Health Sciences in Bethesda, Md., and author of the 2006 book "The Guide to Cancer Survivorship."
"It can influence your immune system to speed up healing," he added.
The Web sites become daily diaries for many users, places to post updates from the latest diagnoses and medical procedures to what kind of Popsicle the sick person prefers for lunch. Caregivers, too, are able to log their struggles with the situation, including frustration with an increasingly impersonal medical system.
"People know if it's a particularly rough day and you're bummed out, or if it's a particularly good day and you need to celebrate," said Melissa Knoll, 36, of Ham Lake, Minn., whose husband, Greg, also 36, was diagnosed two years ago with a rare and aggressive form of cancer.
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