Get Moving With Scleroderma

About the Group

We invite you to join our monthly “Get Moving with Scleroderma” meetings! This group is hosted by the Scleroderma Foundation of Greater Chicago in partnership with The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS). Together we will discuss ways to improve our overall health and improve scleroderma-related symptoms through movement and exercise. Each month we will focus on a different topic. The meetings will include various guest speakers as well as group discussion and sharing of ideas. We will also explore other lifestyle changes that impact our health such as nutrition, mindfulness, and breathwork. These meetings are open to all those living with scleroderma and their family or caregivers from any geographic location

Our relationship with exercise and movement is an ever-changing one and we are here to meet you wherever you are on that journey.

Why Participate:

Do you have questions about what activities you can or should do because of certain physical limitations that scleroderma presents? Are you lacking motivation or just not sure where to begin when it comes to exercise? Have you decreased the amount of activity you do because of your scleroderma diagnosis? Have you lost weight or muscle because of scleroderma?

Here are some of the things you can expect by participating:

Discover how exercise can potentially benefit scleroderma symptoms such as skin function, gastrointestinal function, oral health, circulation, inflammation, endurance, and more.
Learn how many different types of exercise can benefit scleroderma, even gentle movements.
Connect with a group of people who understand what you’re experiencing.
Get motivated to maintain a healthy lifestyle in a caring and supportive environment.
Identify specific, achievable goals and habits to focus on.

Upcoming Meetings

Meetings are typically held every 3rd Tuesday at 5 pm CST via Zoom. Education and group discussions are a part of each meeting.

- November 21: Healthy Habits for the Holidays and Yoga for Scleroderma Recap

- December 19: Special Guest Leslie Cogan

- January 16: Special Guest Medical Advisor Dr. Lesley Saketkoo

- February 20: Special Guest Greg Cohen. Greg is an athletic trainer and distance runner, who also suffers from scleroderma. In 2019, Greg set out on an incredible mission to run 4 marathons in 1 year, in an effort to raise awareness and in support of the scleroderma community. His incredible journey was documented in the film Run Greg Run, which can be found on YouTube or Prime Video. You don't have to be a marathon runner to appreciate the grit and determination that it took to reach his goals. Greg will share his journey, his struggles, and his triumphs in hopes to inspire anyone, regardless of your fitness goals or abilities.

- March 19: Special Guest Erin Raber, MA, MT-BC. Music Therapy for Wellness. This presentation explores ways to use your voice as an instrument of healing through music therapy and sound healing techniques. Experience how music and sound can help those navigating scleroderma with pain management, improve breathing/lung capacity and throat irritation, reduce stress and anxiety, increase energy and mental clarity, improve mood, decrease feelings of isolation, and promote emotional transformation and release. Experiential will include breathwork, vocal meditation, toning, and singing. Some of the musical activities may present challenges for Scleroderma patients who experience lung and throat issues, however, modifications can be made in those cases. No prior musical or vocal training is necessary to engage in music therapy.

- April 16: Special Guest Henrik Pettersson, Physiotherapist, PhD, Karolinska University Hospital and Karolinska Institutet, Stockholm, Sweden. Dr. Petterson will discuss physical activity and exercise in scleroderma. He will share the results of his research and also his perspective as a clinician.

“Virtually all scleroderma manifestations can benefit from exercise.”

Dr. Lesley Ann Saketkoo

Educational Resources

Videos

Readings

Download

Exercise as Medicine in SSc

Read more about Exercise and Scleroderma with this article by G-FoRRS. The text provides an overview of how exercise affects the body and then applies this knowledge to the challenges of SSc while tailoring exercise to specific goals.

Websites

Yoga for Scleroderma

Learn More

Exercise is Medicine!

Medical Advisor

Dr. Lesley Saketkoo is a strong advocate for approaching exercise as medicine and serves as the medical advisor for the Get Moving with Scleroderma group.

Dr. Saketkoo is the director and founder of the New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center. She is a clinical researcher recognized for her work in clinical trial design and in identifying patients' priorities in life-threatening autoimmune illnesses including pulmonary hypertension and pulmonary fibrosis. She also developed research tools with patients including targeting self-management strategies with yoga, dance, and singing for lung health rehabilitation as well as mindfulness practices. In 2018, she was honored with Doctor of the Year from the Scleroderma Foundation.