Have you thought about joining a support group? Curious about who the leaders are? We sat down with a few of the group leaders and asked them some questions to gain further insight into their group dynamic and some fun facts about themselves! The conversation begins with Edie Northfield in Naperville…..
How long have you been running the group?
I started the Naperville Group in October 2012 when it became apparent that no one else I knew could understand the changes that had taken place in my body or help me cope with the many aspects of this rare disease.
Number of people in your area that participate in the group?
We’ve had nearly 50 scleroderma patients attend meetings over the last year, some with their family members or friends. We average 10-12 people per meeting.
When and where does your group meet?
The Naperville group meets from 10am-noon on the second Saturday in January, March, May, July, September, and November. We meet at Grace United Methodist Church, 300 East Gartner Road in Naperville.
What do you love about your support group?
I love my group because scleroderma patients have a chance to talk to other patients who truly understand their seemingly unique body pains and dysfunctions. We no longer feel alone.
How does your group help and inspire each other?
We offer suggestions for making better food choices, find adaptive exercises, talk about ways to combat medicine side-effects, discuss medical tests, and more. We encourage each other to keep trying and not give up. Some of us have even become friends outside of the support group.
Tell us an interesting fact(s) about yourself.
I knit and crochet prayer shawl that my church donates to comfort others in distress. I also make quilts, love to travel, and I spend as much time as I can with my 7 feral cats.
Any words of advice for other patients and caregivers?
You know your body better than anyone else. If something doesn’t feel right, keep mentioning it to your doctor, or find another one, until you are satisfied that the proper outcome has been achieved.