CENTRAL TO THE MISSION OF THE NATIONAL SCLERODERMA FOUNDATION IS
offering support and is the primary focus of this edition of Scleroderma Voice. Since its formation in 1998, support groups have provided individuals living with scleroderma an outlet and source of connection and information. Support groups are a safe space for those affected to share their fears, triumphs, hopes and dreams and frustrations, while meeting others who have scleroderma.
In the 1990s, support groups could be found in limited parts of the United States. In person-meetings were common but not accessible to everyone. As time has continued, technological advances made virtual options the norm. Still, many prefer those face-to-face opportunities to get together.
Participation is essential for the success of support groups. Just as important, if not more important, is leadership of those groups. We are grateful to the many leaders across the United States who selflessly lead our support groups with care, compassion, empathy and wisdom. The National Scleroderma Foundation ensures support group leaders are well equipped and prepared with Scleroderma Support Group Leader Education training, which helps them take on the challenges of coordinating meetings, including offering valuable educational content to inform attendees about issues most relevant to them when it comes to living better with scleroderma and how to navigate the many emotions one’s journey with scleroderma can travel.
The training program was developed in collaboration with Scleroderma Patient-centered Intervention Network, and is commonly referred to as SPIN-SSLED. It’s 13 weekly sessions of 60-90 minutes of content led by a trained instructor. Each week addresses different aspects of leading a support group, including structure of meetings, recruiting members, fostering positive group culture, supporting yourself and more. Those who complete the required training, become certified.
As we reflect on more than two decades of support, and the invaluable role of our support group leaders, we are sharing two journeys – a seasoned support group leader and a new support group leader.
ACCEPTING A NEW CHALLENGE — SCLERODERMA AND SUPPORT
Amanda Lippincott‘s journey with scleroderma started in 2018.
“I had recently gotten engaged, and I wanted to look and feel my best for my wedding day in 2019,” Lippincott said. “At this point, my engagement ring, even in the intense summer heat, always fit my finger.”
But she said in May 2019, she woke up unable to move her hands because they were so swollen. She said she felt like they would pop open if she tried to close them. She thought perhaps she slept on them wrong. She tried to put her engagement ring on, and it wouldn’t fit over her second knuckle.
“Immediately, I knew something was wrong, and I made an appointment with my primary doctor,” Lippincott said.
She said she received a referral to a rheumatologist. One month later, she had her first appointment. Aside from the swelling, she started to experience joint pain and skin tightening. Within three months, her doctor diagnosed her with scleroderma.
Almost one year after being diagnosed with scleroderma, in September 2020, Lippincott found out about the National Scleroderma Foundation. She was looking for support and found just what she needed on the Foundation’s website.
“I started attending a virtual support group, and it was amazing to connect with people who knew how I was feeling,” she said.
She said she was met with compassion at the local Doylestown Chapter, and the support group leader took the time to answer her questions on being newly diagnosed. From there, she said she started attending the support group for young adults.
“When I sought support, I was in a really bad mental space,” Lippincott said. “I was just getting my life together, when suddenly I received this diagnosis that shattered my world. Since scleroderma is rare, I felt so alone and vulnerable.”
She said attending support group meetings created a sense of relief. It was a source of inspiration for her.
“I never want someone to feel the way I felt after my diagnosis, that’s why I decided to lead a support group,” she said. “I wanted to be there for anyone who needs a friend or someone to just listen to what they’re going through. I want to make a difference in our community.”
Today she leads a virtual young adult support group. She’s spoken on panels at the National Scleroderma Conference about mental health and being a young adult with scleroderma. Her involvement with the Foundation has expanded even more. She’s a co-leader for the Scleroderma Young Adults Needing Connecting support group and on the Patient Advisory Board.
SYNC is for young adults between ages 20-40. They meet monthly. She says they use the meetings to discuss what’s going on in their lives, bring up questions and talk about new symptoms they’re experiencing.
“We use the meetings to express how we’re feeling,” she said. “Some topics we’ve talked about are dating, pregnancy and generally living with scleroderma.” Lippincott encourages others to join support groups to know they’re not alone and to relate to others living a shared experience.
PASSION FOR OFFERING SUPPORT
Carla King has a similar story to Lippincott. She was diagnosed in 2005 with scleroderma. She connected with Marie Coyle (whose story was detailed earlier in the magazine) who gave her some information about a local support group in New Hampshire – the closest one at the time. When the leader of the group had to step down, she stepped in.
She now co-leads the Southern New Hampshire Support Group. She says support has been an important part of her life.
“For me, it’s so important to be able to talk to someone like me – someone with the same challenges,” King said. “This is not a disease like any other, and it’s important to have someone to talk to and share with. I get inspiration from my meetings. Seeing another member still work as a house cleaner, with tight, bent fi ngers, or another who was still teaching elementary school, made me feel like, ‘it’s OK, I can still do this.’”
Although the concept of support is nothing new, she says over the last couple of decades, the way members connect has changed drastically – now including social media groups, in-person conferences, and most recently, virtual meetings.
FROM ONE LEADER TO ANOTHER
Lippincott and King had the opportunity to visit about their experiences as support group leaders. King offered Lippincott some advice on growing a successful support group.
Q: (Lippincott) What’s your advice for keeping participants coming back each meeting?
A: (King) We need to keep people connected, so they want to come back.
Q: (Lippincott) Do you have speakers come to your group? If so, how do you find them?
A: (King) We have not had a speaker in several years. But I think that speakers add interest for those looking for information.
Q: Lippincott Any tips for someone looking to start their own group?
A: King I would say to find a co-leader – someone who can cover if you can’t make it. A team is much easier, and each leader brings their own strengths to the group
Q: Lippincott What have you learned from being a support group leader?
A: King I have learned to work with different personalities.