Scleroderma Peer Mentor Program

Scleroderma Peer Mentors are Michigan Medicine patient volunteers who receive extensive UM peer training and offer other patients support in clinical and other settings.

Your Peer Mentor also has Scleroderma. This real-life experience can be beneficial in thinking through solutions to barriers that may get in the way of meeting your goals. Currently, the Michigan Medicine Scleroderma Program hosts 14 volunteer Peer Mentors; some are pictured here.

Due to the COVID-19 pandemic, please note that all Peer Mentor discussions will take place through Zoom or by phone.

 Scleroderma Peer Mentor Group Photo

What To Expect When Working With a Peer Mentor

Peer mentors have a vital role in helping patients with Scleroderma take control of their lives and their healthcare, especially when they are newly diagnosed. Peer Mentors help patients understand and face the issues of the disease. They help patients think through alternatives and cope with emotions that are natural to the process. They are positive role models who provide hope, encouragement, and understanding.

If you are a Michigan Medicine Scleroderma Patient and would like to meet with a Peer Mentor, please click on the button below. We will be in contact with you soon. View our informational flyer.

Join the Scleroderma Program Peer Mentor button

The Michigan Mentor Peer Difference - Patient Story *

Patricia will be traveling from Arizona to Michigan to finally receive a diagnosis for what her physician suspects may be Scleroderma. After multiple doctor's visits, tests, and months of waiting, she finally receives a referral to one of the world's best Scleroderma centers at Michigan Medicine.

At her appointment, the program director, Dr. Khanna, confirms Patricia's fears with a Scleroderma diagnosis. Patricia is scared, alone, and overwhelmed. Her flight leaves in the morning. What about tests and treatment, she thinks? She's worried and needs information and support. Like most, she's Googled Scleroderma online. There is no Foundation chapter in her area. More worrisome is that what she's seen online is frightening and often negative.

Dr. Khanna reassures Patricia that she will receive the best care and communicate with her Arizona medical. Distance isn't an issue. A member of the Michigan Medicine Scleroderma team tells Patricia about the Peer Mentor Program. She learns that other Scleroderma patients volunteer in a clinical, trained peer support role designed to provide guided assistance to other patients.

As Patricia boards her flight the next morning, she feels confident in her clinical team. No matter if she lives 20 miles or 2,000 miles from Michigan Medicine, her team will be with her on her journey.

*Names and details have been changed.

Fast forward one year…
Patricia has a follow-up visit with Dr. Khanna. She feels better and is grateful for the innovative care and support she's received from the Michigan Medicine Scleroderma Program. Her Peer Mentor has become a trusted friend. The virtual social events she's attended are fun, and she enjoys being with other people with shared experiences.

Patricia feels fortunate to have a top-notch innovative clinical team, a trusted Peer Mentor and a Scleroderma community group that has her back.

Peer Mentoring Match-Up Process

During your first appointment with a Michigan Medicine Scleroderma Physician, you will learn about the Peer Mentor program. The Peer Mentor program is an optional support system available only if you wish to receive support. If you want to speak to a Peer Mentor, the Physician will inform the Peer Mentor Coordinator. After the Peer Mentor Coordinator has gathered pertinent details, they will reach out to you and explain the program in detail. You will be asked to answer an online survey of general information to match you with a Peer Mentor that can best relate to your unique situation.

After the matching process, a Scleroderma Peer Mentor will contact you via your choice of communication. Peer Mentors are available to talk to you on the phone, via email, or in-person. Your Peer Mentor is available to you for as long or for as many discussions as you need. Some patients may only wish to speak once, while others keep in constant communication. You choose what works for you.

Why Peer Mentors Are Important

"To try to help others avoid the feelings I experienced, or at least make them feel like they are not alone!!" – Sheri, Scleroderma Peer Mentor

"Life has changed drastically for me since my diagnosis. I still have many physical limitations but have stabilized and make each day the best it can be with my new life (after Scleroderma!). There is life after diagnosis! – Anita, Scleroderma Peer Mentor

"No matter how close you are to friends or how much you trust your medical team, nothing beats talking with someone who has walked in your shoes." Sondra, Scleroderma Peer Mentor.

In addition, the Scleroderma Peer Mentor Program and Scleroderma Backers meet regularly for social events, informational and educational sessions, and sometimes invite guest speakers to talk about topics of interest. Please contact Mary Alore if you are interested in attending these events.

Peer Mentor Group Zoom meeting image

Meet our Peer Mentors image

Additional Community Support

Scleroderma Backers is a group of Michigan Medicine patients with scleroderma who offer community support to other patients with scleroderma around the world, through social and fundraising events, and informal education.  Follow Scleroderma Backers on Facebook.