Patient Web sites used for news, support in crisis

Stephanie Nano

NEW YORK — When he was diagnosed with kidney cancer last year, Dave deBronkart needed an easy way to keep his far-flung friends and family updated. So did the president of the American Medical Association (AMA) when he fell ill months ago. And so did the mother of a soldier wounded in Iraq who later suffered brain damage.

They all turned to the Internet, setting up individual Web sites to give progress reports. In return, they get posted notes of encouragement and support — all without having to repeat the details in emotional and exhausting phone calls.

“I had already been burning myself out with phone calls” telling people, said deBronkart, of Nashua, N.H.

DeBronkart, like others, used free online services like CaringBridge and CarePages and their user-friendly formats to quickly set up a Web site to share the news — both good and bad. Patients themselves or family members write about treatment and recovery from illnesses, accidents or other medical crises, such as premature births.

Sarah Doyle first used CarePages to prepare herself for the arrival of her now year-old son Aidan. She learned during her pregnancy that Aidan would be born with his liver and intestines exposed. She read about the experiences of other families who had dealt with similar birth defects.

“I got a good idea [of] what to expect. It wasn’t such a shock,” said Doyle, of Bellingham, Mass.

She has used her own page to chronicle Aidan’s 11 months in a Boston hospital, his multiple surgeries and his arrival home in March. She recently reported that Aidan said his first word: Mama.

“We really use it as a tool to say, ‘We’ve been through some of the worst and now we’re doing fine,’” said Doyle, who’s expecting a second child in September.

Both online services were born out of medical emergencies, and have been used by tens of thousands since.

Sharon and Eric Langshur used a Web site created by a relative when their first child, Matthew, was born with a heart defect in 1998 and needed surgery. From their experience, they created the Chicago-based CarePages.

“The emotional support really took us by surprise,” said Sharon Langshur, who was in training to become a pediatrician when her son was born.

Sona Mehring was involved in Web site design in 1997 when friends were faced with a difficult pregnancy. When she offered help, they asked her to just “let everyone know what’s going on.” She set up a Web site that marked the beginning of CaringBridge, based in Minneapolis.

Both services are similar, but with different features. To set up a Web site, all that is needed is an e-mail address and access to the Internet. There are different levels of privacy — ranging from those open to anyone who knows the page name, to those that are restricted to approved visitors. Individual pages can’t be found through search engines.

Once an update is posted, visitors can be notified through an e-mail alert system.

“These stories are very personal, very unique and very powerful,” said Mehring.

For visitors, CarePages provides a list of do’s and don’ts when dealing with someone with a serious illness.

“Illness and hospitalization are incredibly isolating, and then to have people back away, can be very hurtful,” said Langshur.

CaringBridge is supported primarily by donations from users, as well as sponsor fees from hospitals. CarePages also has arrangements with hospitals and sells advertisements.