Log On For Support

Cathy Henderson poses a question to her online support group. "I don't need to hug them," she said of her peers with diabetes, but they do give her practical advice. (By Richard A. Lipski -- The Washington Post)
Buy Photo

She doesn't depend on the group for emotional support -- "I don't need to hug them," she said -- but most other members have had diabetes for much longer than she, and she has found their advice invaluable. And she has never turned to it as a substitute for medical advice. "I would never not ask a doctor something if I felt that I needed a biochemical answer," she said.

One of the group's oldest members has been part of a Harvard diabetes study for 50 years; the youngest, Lisa Whittington, is a senior at Montgomery Blair who has been diabetic since she was 9. She met Henderson in 2006, soon after the latter was diagnosed, and became something of a mentor to the older woman.

"She handled me really well, I thought, for a kid," Henderson recalled.

Whittington said she was excited to join the group, and sought advice from other members last summer when she was preparing to switch from insulin injections to an implantable insulin pump. She said she is still learning how to use the pump optimally: "It's different for everyone and for every kind of pizza," she said. "I'm still working on what works best for me."

Smith said being in the group has made her aware of how many misconceptions exist, even among people who have lived with diabetes for a long time. As a professional diabetes educator, she provides authoritative information whenever possible; if she's uncertain, she urges group members to consult their doctors.

She said the experience has made her better at her job: "As an educator, I can see how all personalities may address a question differently. It helps me with my own clients."

Since access to the group so far has been by invitation only, it has not been vulnerable to spam or unwanted marketing. "I'm glad we're not like a chat room," Smith said. Messages "can be a little bit more personal, and they can be reserved for the people that you know you want them to get to."

A 'Facebook for Diseases'

Making it easier for people with rare diseases to connect with one another has long been a mission of the National Organization for Rare Disorders (NORD), but until recently the organization did so chiefly by providing telephone numbers of patients willing to talk.

Eighteen months ago, NORD decided to create and host an online community on its Web site, where patients with unusual diseases could find and talk to one another even if they lived on different continents.

To do so, NORD partnered with Inspire, a two-year-old company based in the Washington area that creates online health support communities for patients and their caregivers.

"You could kind of describe it as Facebook for diseases," said chief executive and co-founder Brian Loew. Loew, who has Type 1 diabetes, said living with his illness prompted him to create the company. "I wanted online connectedness, even though I'd been Type 1 forever. I just wanted to talk about things," he said.

Inspire, which is funded partly through private donations and grants including an unrestricted educational grant from the Bristol-Myers Squibb Foundation, is working with numerous organizations to host such communities for various patient groups. Those groups include people with lung cancer, ovarian cancer, cervical cancer, osteoporosis, sudden cardiac arrest and amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). The company hopes ultimately to use what Loew calls "anonymized patient data" to help with medical research, but he emphasizes that patients' names and contact information would never be released to drug companies or other trial sponsors.