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.
Want to join?
Click here to complete the form at the bottom of the page
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:
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Discover how exercise can potentially benefit scleroderma symptoms such as skin function, gastrointestinal function, oral health, circulation, inflammation, endurance, and more.
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Learn how many different types of exercise can benefit scleroderma, even gentle movements.
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Connect with a group of people who understand what you’re experiencing.
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Get motivated to maintain a healthy lifestyle in a caring and supportive environment.
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Identify specific, achievable goals and habits to focus on.
2025 Meetings and Presenters
Meetings are typically held every 3rd Tuesday at 5 pm CST via Zoom. Education and group discussions are a part of each meeting. Stay tuned for full schedule.
- January 21: Feeling foggy? Understanding the Potential Causes and Coping Strategies for People with Scleroderma.
This month, we are featuring special guest Yen Chen, PhD. Dr. Chen is a health behavioral researcher at the University of Michigan Scleroderma Program, and is dedicated to enhancing the quality of life for people with scleroderma. In this talk, she will share valuable insights into her team’s development of a cognitive health program called Brain Boost. This program is specifically designed to address brain fog experienced by those with scleroderma. Dr. Chen completed her Ph.D. in Health Behavior and Health Education at the University of Texas at Austin in 2020. She then joined the research team at the University of Michigan as a Postdoctoral Research Fellow, working with Drs. Susan Murphy and Dinesh Khanna. Her research focuses on investigating how health behaviors, symptoms, and psychological factors influence overall well-being, aiming to make a positive impact on patients’ lives.
- February 18: Caring for Your Skin.
This month, we are featuring special guest Celeste Freeman, OTR/L,CHT. Celeste has treated many scleroderma patients over the years and will be offering strategies for treating the skin that she has seen to benefit people living with scleroderma. She’ll also discuss the basics for prevention of tissue injury as the first priority for those with the illness. Practical and customizable ideas will be shared as well as “tried and tested” products recommended by people with scleroderma she treats in the hand clinic where she works. Celeste Freeman graduated from the University of Buffalo with a BS in Occupational Therapy in 1977, and earned her Hand Therapy Certification,(CHT), in 1992.
- March 18: Why Am I So Tired? Challenges and Solutions for People with Scleroderma.
This month, we are featuring special guest Dr. Susan Murphy. Dr. Murphy is an occupational therapist by training and Professor in the Department of Physical Medicine and Rehabilitation, and of Internal Medicine, Rheumatology Division at the University of Michigan. She also leads the Behavioral Studies Branch of the University of Michigan Scleroderma Program. She has a particular interest in advancing telehealth and rehabilitation for people with scleroderma, leading the TRACC-R Center at the University of Michigan. Dr. Murphy has expertise in patient-oriented and community-engaged research methods. This talk will discuss common issues that cause fatigue in scleroderma and current evidence-based resources and programs that can help people manage fatigue.
- April 15: The MELT Method
In April, we are featuring special guest Mary French. Ms. French is a MELT level 5 trainer and an advanced Pilates instructor. The MELT method is a series of massaging techniques and strengthening activities created to ease chronic pain, stiffness, stress, and bodily tension. The method works to build fluid flow between connective tissue (fascia), which may be helpful for those with mobility issues or chronic pain. Following her experiences with plantar fasciitis, Mary found the MELT method to be the most healing and impactful on her body, and she is eager to share her experience. This session will also primarily focus on the MELT hand treatment to help those experiencing skin thickening and joint pain.
2024 Meetings and Presenters
- January 16: Special Guest Medical Advisor Dr. Lesley Saketkoo
- February 20: Special Guest Greg Cohen.
- March 19: Special Guest Erin Raber, MA, MT-BC. Music Therapy for Wellness.
- April 16: Special Guest Henrik Pettersson, Physiotherapist, PhD, Karolinska University Hospital and Karolinska Institutet, Stockholm, Sweden
- July 16: Special Guest Bethany Doerfler, MS, RD, LDN
- August 20: Guest and Topic TBD
- September 17: Special Guest Woody Siddall.
- October 15: Guest and Topic TBD.
- November 19: Special Guest Malin Regardt.
“Virtually all scleroderma manifestations can benefit from exercise.”
Dr. Lesley Ann Saketkoo
Educational Resources
Videos
Readings
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
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.
Get Moving With Scleroderma Sign-up Form
