Log On For Support
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.