Legacy Stories: Support
"If my life went exactly as planned, I wouldn’t have learned humility and acceptance"
35 years ago, a support group research project led to a lupus diagnosis, lifelong friendships, and a facilitator who led from experience.
In January 1985, Nancy Kelly, a psychiatric nurse at Hahnemann University Hospital, was interviewed to co-lead a research study for Hahnemann’s Systemic Lupus Erythematosus Center, directed by Dr. Ralph DeHoratius. The study, led by fellow nurse Carolyn McGrory, aimed to see if lupus support groups were effective. Nancy was chosen out of many applicants to co-lead the study- first because of her valuable psych experience and, as Carolyn laughingly admits, because Nancy said, “This sounds so interesting, I would do it for nothing.” The study gathered a group of 25 women to participate in monthly support group meetings for 2 years to determine if support groups made an impact on the quality of life for people living with lupus. This molded the beginnings of Philadelphia Tri-State Chapter support groups.
Not knowing much about lupus, Nancy threw herself into research to prepare for the group. She soon found herself sleeping on her lunch hour and experiencing joint pain. Could it be possible that she too had lupus? Or was it simply medical student syndrome? She asked Dr. DeHoratius to administer the blood tests involved in a lupus diagnosis. Ironically, two months later, Nancy was formally diagnosed with lupus.
With her strong spirit, Nancy was well-equipped to lead the group and they started meeting as scheduled. Study participants were expected to provide feedback on the group’s effectiveness. The study ended after two years and the quantitative data made it abundantly clear that support groups work in providing necessary emotional support for people living with lupus. On a qualitative level, deep friendships were formed, traditions began, and original members still stay in touch to this day. Although the study ended after two years, the group continued to meet. Nancy attributes the support group for helping her in coming to terms with her diagnosis. Despite the challenges, she grew immensely from having a support system and learned how to self-advocate.
This group was one of the first support groups under the Chapter umbrella. Today, the original researchers are just as devoted to this cause as before. Nancy and her husband Rick have been strong supporters of the Chapter for over 20 years and participate in every Lupus Loop; Carolyn volunteers on our Community Services Committee and was instrumental in developing our self-help course; and Dr. DeHoratius led the Chapter’s Medical Advisory Board for many years before he retired.
The original support group formally existed until 2008. Some members then joined the Abington support group, which continues to meets monthly at Abington Hospital. Presently, the Philadelphia Tri-State Chapter hosts 11 support groups throughout the region that are a great benefit to many people, led by warm and caring facilitators.
The world has changed considerably since that initial study: now, people consult a variety of websites to learn more about lupus and connect across the globe in an instant. Public knowledge of lupus is much higher than it was in 1985, but there’s still much to be done in changing general perceptions of the disease. Of this experience and her lupus diagnosis, Nancy says, “If my life went exactly as planned, I wouldn’t have learned humility and acceptance. I grew immensely out of adversity. I did not take my life for granted.”
Support groups are an integral part of our support services. Please contribute to these services, which includes the Guggenheim Grant-in-Aid program, Physician Directory, Lupus Connect, and the National Resource Center on Lupus.Make a contribution