Message from a Support Group Leader
Elaine, a support group leader here in MN, shared with us about support groups - why they are important and how to get involved.
Many people diagnosed with scleroderma have never heard of the disease before. They don't know anyone with scleroderma and don't know what living with the disease will be like. A diagnosis can be confusing even if the patient reads about the disease at a reputable source like the national Scleroderma Foundation website.
Meeting other patients face to face can reassure the newly diagnosed that others are able to live with the disease. Members stay because even long time support group members are able to learn about new treatments, over the counter remedies, and techniques used successfully by fellow members, and we trade all sorts of info.
Support groups really do support patients and caregivers by being a place to ask questions and get answers from people who "know" what having scleroderma is like. I was personally helped by our membership when I needed a pulmonologist because mine had left her practice. I wanted a doctor that actually had experience with scleroderma lungs. Several members suggested names. My current doctor was one of those recommended.
How can someone get connected to an existing support group or start one?