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.

 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.

Meet with a 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 Sophia 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.

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

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

Meet Some of Our Scleroderma Peer Mentors

Anita

Anita a Scleroderma Mentor

2007 was a rough year. It began with extreme fatigue, swelling in my hands and feet, and shortness of breath. After several weeks of testing and steroid treatment, I was getting worse. My husband insisted that I go to the emergency room, where subsequently, I was hospitalized and went downhill quickly. My organs (kidneys, heart, lungs) were failing, and it was far too complex complicated for that hospital to care for me.

Thankfully, I was transferred by ambulance to Michigan Medicine. After a very stormy few weeks, I was diagnosed with acute crisis Scleroderma. I was lucky to survive, thanks to the Michigan Medicine doctors and staff.

Hopefully, my story compels others who find themselves diagnosed with Scleroderma to get their care from a dedicated scleroderma specialist.

Beverly

Beverly a Scleroderma Mentor

I am currently most affected in my gastrointestional tract and my hands/wrists. My family and traveling are my main interests. And learning about research related to Scleroderma gives me great hope.

 

Carol

Carol a Scleroderma Mentor

"None of us willingly chose to be a member of this scleroderma "club." Yet here we are! I have learned that it is possible to face this disease with the help of family, friends, medical folks, fellow patients, and others - and not only face it but thrive. As a wise person told me, 'You don't get to pick your disease, but you do get to pick how you approach it.'"

Caylin

Caylin a Scleroderma Mentor

At the age of 6, I was diagnosed with localized morphea on my right arm. It started out the size of a quarter and looked like a bruise. The dermatologist did a biopsy and referred me to Pediatric Rheumatology at Michigan Medicine. The disease began to spread rather quickly, all the way up and down my right arm. My right hand ended up being affected rather severely. My ring finger is permanently fused at 90 degrees, and my pointer finger does not have a nail. I also developed arthritis in my hand and wrist.

I started my first round of treatment in second grade. It consisted of prednisone and weekly methotrexate injections. This caused weight gain, nausea, and a slew of insecurities. I was able to stop the prednisone within a year, but the methotrexate injections continued for a few years. The disease stabilized throughout middle and high school. I was able to shed the steroid weight and feel more confident in my skin.

I became someone who could self-advocate in healthcare settings, which came in handy during my second round of treatment. During my sophomore year of college, I started developing lesions on my chest and left arm. I was put on IV steroids and methotrexate pills. I ended up having to stop the IV steroids for quality of life reasons. I continued the methotrexate with no side effects. Since then, I have been on what they call 'maintenance' drugs--mild immunosuppressants.

I focused my undergraduate studies at Michigan State University on medical social work and have elected to get my master's degree in public health and social work at the University of Michigan. I hope to use my chronic illness experiences to help decrease healthcare disparities in populations that face chronic illness. I'm specifically interested in health literacy, doctor-patient relationships, and palliative care before hospice.

Mackenzie

Mackenzi a Scleroderma Mentor

In July 2017, I underwent a stem cell transplant at the U of M hospital. The best decision for me! This journey has not been an easy one; however, I continue to stay positive, especially knowing I have a fantastic support team behind me at U of M!

 

Mary

Mary  a Scleroderma Mentor

I was diagnosed with Scleroderma in October 2011. I have been blessed to have the great doctors and staff at the Michigan Medicine Scleroderma Program help me along this journey.

My first symptoms appeared in January 2011. After many months and many doctor visits, I was referred to Michigan Medicine. My hope is to help others going through this disease. There is hope that we can share. Nobody should go through this alone.

Michael

Michael  a Scleroderma Mentor

I felt like the Deer in the Headlights when I was diagnosed with Diffuse Sclero in '13. The diagnosing rheumatologist told me I would not live a long and full life. Luckily I was referred to the U of M Scleroderma Clinic.

And with the care of Dr. Khanna & the great staff there, I've leveled out to only maintenance patient care.
Not only did I receive the finest treatment to achieve this, but my hope was restored by everyone also.

Right from the start, I became an Advocate for the Scleroderma Foundation. And even before I became a Patient Peer Mentor, I started helping others going through the same Headlights I faced after my own diagnosis. The feeling of helping someone or restoring their hope is an indescribable & emotional experience.

Nadia

Nadia  a Scleroderma Mentor

I am currently working full time, which can be challenging but helps me to keep my mind active and moving forward. I have also been diagnosed with cardio and pulmonary conditions related to my Scleroderma, along with the condition itself. I enjoy a deep laugh most of all, whether with friends or family or just watching a silly thing on tv, a good laugh makes all the stress of the day go away.

 

Sheri

Sheri  a Scleroderma Mentor

While I was living in Tuscon, Arizona, and tending to our 1-year-old son, I began to notice painful ulcers on my fingertips. As the ulcers persisted, they became unbearable. It would be another long and painful year before I got any answers.

In January 2007, doctors were finally able to link my painful swollen fingers to Scleroderma. I could hardly pronounce it, let alone understand it. I knew I couldn't ignore it. I had to set boundaries for myself and even had to teach myself a really important word: no.

After reaching a point of exhaustion, we relocated to Michigan to be with family and friends. It's nice to be around other people who understand the disease, especially since I don't look sick to most people.

I can't work. I love people. I'm a people person. I want to make a difference in people's lives. On this journey, I'm still going to make a difference in people's lives.

Sondra

Sondra  a Scleroderma Mentor

In early 2012, my life voyage was headed towards Scleroderma. My first physical signs were in my palms. Both palms were bright red for a few days, then white specks would appear. Or one palm would be a different color than the other. I started seeing changes in my fingers. My knuckles were looking swollen, and my fingers were curving. By the end of summer, I was referred to a Rheumatologist. After several appointments, which included X-rays and lab testing, I was diagnosed with Raynaud's disease.

However, the changes in my hands/fingers were getting aggressive. Fatigue started to set in. By the third visit, the doctor said, "I believe you have Scleroderma." Sclerod.. what?

I was immediately referred to Michigan Medicine for an official diagnosis. After my lab tests, heart, lungs, and GI tests, I was officially diagnosed with Systemic Scleroderma. This was the beginning of my life as a Scleroderma patient...my New Norm! I hope my own faith, personal experiences, and willingness to share with others can ease one person's fears and concerns. We all need support from time to time.

Terrance

Terrance a Scleroderma Mentor

I share the frustration of having fatigue and pain and the overall lack of energy, along with fighting the emotional depression of looking in the mirror and remembering who you used to be.

 

 

 

If you are a Michigan Medicine Scleroderma patient and would like to meet with a Peer Mentor, please fill out our form. We will be in contact with you soon.

For more Scleroderma Stories, visit our Support our Work page.

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.