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
Personal patient Web sites transform the experience of illness, users say
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In the hours after Brad Coulter's minivan plunged off the collapsing I-35 bridge in Minnesota last summer, family members scrambled to spread the word. Phone calls were impossible; individual e-mails were overwhelming.
They turned instead to CaringBridge.org, a nonprofit patient Web site service recommended by local hospitals. Details were sketchy, but this much was clear: Brad and his family, including his wife, Paula, and teenage daughters, Brandi and Brianna, had been on the bridge as it fell into the Mississippi River.
Everyone was hurt, but Paula was critical.
"Updates will follow," that first CaringBridge posting said. "Prayers are appreciated."
In the six months since then, more than 425,000 visits — and many, many prayers — have been logged on the site that tracks the recovery of the Coulter family, particularly Paula, 43.
It's a high-profile example of a growing trend in what one organizer calls "compassionate technology:" individual health-care Web sites that allow patients to share the progress of serious injury or illness.
Through daily online journals and photos, people confronted with health emergencies can keep friends and family updated instantly.
"It's pretty much been our communication," said Brad Coulter, 44, a database manager who suffered five broken vertebrae in the accident.
The Coulters have been able to post crucial details about their struggles. In return, well-wishers have been able to sign up for e-mail alerts and offer messages of support and caring without intruding on the family's healing.
'Connecting the human spirit'
"I really think of it as connecting the human spirit," said Sona Mehring, 46, who started the Minnesota-based CaringBridge in 1997 after helping friends cope with the birth of a premature baby.
Between CaringBridge and CarePages, the industry's other large patient Web service, nearly 200,000 sites have been created in the past decade. Hundreds more have gone up on private systems sponsored by hospitals.
"So many people wanted to keep in contact with family and friends without having to constantly answer the phone," said Angie Atema, who runs the "Go Fetch" service offered by the Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, Tenn.
Practicality inspired the first services, said Dr. Sharon Langshur, co-founder of CarePages, based in Chicago. She and her husband started the business after their son, Matt, was born with heart problems in 1998. The new parents found the experience isolating and overwhelming.
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