Log On For Support

By Susan Okie
Special to The Washington Post
Tuesday, February 5, 2008

Eighteen months ago, at age 56, Cathy Henderson, a physically fit suburban Maryland resident, received news that left her reeling. She learned that she had diabetes -- and not Type 2, the kind that often develops gradually in overweight adults, but Type 1, a rarer form that typically shows up suddenly during childhood or adolescence.

"This came as a complete surprise," recalled Henderson, who works as a college adviser at Montgomery Blair High School in Silver Spring. "I'd never felt better in my life. There's no family history. . . . I didn't see it coming."

In the following weeks, she had to learn to test her blood glucose levels six times a day, to monitor her food intake and exercise patterns, and to adjust her insulin doses, injecting herself with the hormone each morning and before every meal. "I soon found out . . . that you become your doctor," she said. "You can go to an endocrinologist who is the expert in the biochemistry of it, but how do you live with it day to day? How do you do your best to manage it?"

So Henderson, a networker by personality and profession, chose a strategy that is increasingly being tried by people with rare or hard-to-manage medical conditions: She decided to form her own online support group.

Groups whose members meet regularly in person, often sponsored by local hospitals or health-care providers, are a familiar source of assistance for people with common disorders such as breast cancer, heart disease and alcohol or drug addiction.

With the advent of the Internet, online discussion groups, message boards and patient blogs also proliferated, and they can be reached via the Web sites of many disease advocacy organizations.

But until recently, people with disorders that are rare have often had difficulty connecting with others who suffer from the same condition. Judicious use of e-mail and the Internet can ease the sense of isolation and smooth the path to learning how to live with their disease, as Henderson soon discovered.

She first attended a local support group for Type 2 diabetes, which accounts for 90 percent of cases of the disease, but found that the issues being discussed didn't apply to her. For example, for most people with Type 2 diabetes, weight loss and exercise are cornerstones of therapy, but Henderson was already thin and physically active.

Instead, she needed advice on how to get her blood glucose levels under tighter control and how to avoid getting sore fingers from pricking herself several times a day to measure those levels. Moreover, the existing support groups for Type 1 diabetes were designed for parents whose children had the disease, and Henderson wanted to interact with other adults.

No Substitute for a Doctor

A local diabetes educator referred her to Jennifer Smith, a fellow educator who works at Washington Hospital Center and who has had Type 1 diabetes since age 13. Smith and Henderson agreed to collaborate, and each sent messages to friends and associates, looking for others with Type 1 diabetes who might want to join a support group via e-mail.

The group started in January 2007, with a half-dozen members; a year later, it has 13. Although all live in the Washington area, few have met face to face. Whenever someone has a question, he or she sends an e-mail message to the other members and awaits feedback.

Henderson said she has asked questions such as what kind of symptoms to expect when her blood glucose level is falling too low; whether a new brand of insulin injector will work with a shorter needle than the one supplied; and whether other group members had tried a plant-derived natural sweetener.

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.

Such online communities typically include discussion groups, journals and personal profiles of members, Loew said. Each member decides how much information to share on the public site and whether to accept invitations from would-be "friends" in the community. Marketing and hate speech are forbidden. Staffers monitor the online discussions and have the authority to break up fights, to delete inappropriate postings and to ban members who repeatedly break rules.

Members are also advised not to use the site to seek medical advice. "We say when you sign up for the community that this is not a substitute for a doctor-patient relationship," Loew said.

"We really had mixed feelings at first" about hosting an online community, said NORD's Mary Dunkle. "We worried there would be people trying to prey on the people on the site, either trying to sell them products or quack therapies."

The organization's leaders also feared that the community might become a source of medical misinformation. But thanks to the careful monitoring, such problems have not occurred. Currently, there are more than 1,800 members. "In the worst case, they print out a lot of materials to take in to the doctor on a visit," Dunkle said.

In one of the best cases, she recalled, the mother of a child with Soto's syndrome sent a message expressing frustration and asking for help. Children with the rare genetic disorder grow faster than average yet are developmentally delayed -- and because of their large size, teachers often assume they are much older and more advanced than they are.

"Somebody who was familiar with the syndrome . . . was able to give her some very helpful advice about what she was going through," Dunkle said.

Even for someone with a great doctor, talking with other patients can be helpful, said Whittington, the high school student.

"I ask [my doctor] the most questions, because she knows me best," she said. "But the support group is a good place to go to get different kinds of perspectives." You can learn the "kind of things that a doctor wouldn't really tell you." ¿

Susan Okie is a former staff writer for the Health section. Comments:health@washpost.com.