Internet helps those with rare diseases

WASHINGTON, Feb. 28 (UPI) -- People with rare diseases increasingly are going online for information and support, becoming among the Web's savviest users, a U.S. survey indicates.

Seeking health information ranks third behind e-mail and search engines as a reason people use the Internet, but a Pew Internet & American Life Project survey found people suffering from rare diseases -- and their caretakers -- lead the pack when it comes to using the Web, WebMD reported Monday.

"Peer-to-peer health care is a national trend for the worried well, for people with acute illness, and for those living with chronic conditions, but the people living with rare disease take it to the next level," Pew researcher Susannah Fox said. "They probably can't find a support group in their community, sometimes not even in their state. The Internet becomes a secret weapon for them."

Rare diseases are those affecting fewer than 200,000 Americans, and many are far less common than that, yet taken together they afflict about 30 million people in the United States and 250 million people worldwide.

"More than any other segment of our society, those people are tremendously helped by the Internet," Mary Dunkle of the National Organization for Rare Disorders said.

Doctors who specialize in rare diseases are few, and what's bridging the gap, Fox said, is online information and support.

"People living with rare disease, their own or a loved one's, have honed their searching, learning, and sharing skills to a fine point," she said.

Some doctors say they worry that patients will self-diagnose or worse, self-medicate, but Fox said patients with medical issues overwhelmingly turn first to a medical professional.

"Advice from peers is a supplement to what a doctor or nurse may have to say about a health situation that arises," she said.