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For Patients

Check Out Our New Patient Education Video:
See the Latest in Scleroderma Research!


The Peer Mentoring Program is designed to help empower patients with Scleroderma to take control of their lives and their healthcare.

Peer Mentors:

  • Share patient education information
  • Serve as role models
  • Provide empathic listening
  • Aid in problem-solving
  • Help clarify values
  • Help relieve anxiety
  • Legitimize feelings

To SIGN UP for a Peer Mentor, click here!

To BECOME a Peer Mentor, click here! To access the Evaluation Form, click here!

Peer Mentors help patients understand and face the issues of the disease. They help patients think through alternatives, and cope with depression and anger that are natural to the process. They are positive role models who provide hope, encouragement and understanding.

Peer Mentor Matching Process:

To be matched with one of our Peer Mentors, please complete the the Peer Mentor Matching Form located here. You will be asked to provide your contact information, some basic information about how scleroderma is affecting you, and what you would like most from a Peer Mentor. This information will be protected by us and kept in the strictest confidence, according to HIPAA regulations.

We will then match you with the most appropriate person, and they will contact you within a few days. After your first call with your Peer Mentor, you will be asked to fill out an evaluation to let us know how the call went. If it went well, you and your Mentor can take it from there. If things did not go as you had hoped, we will have another mentor contact you to ensure you are comfortable.

All conversations with your Mentor are kept in strict confidence. Peer Mentors are volunteers of the University of Michigan Health System and have been trained through the Patient and Family Centered Care Program of UMHS.

If you need more information or would like to make a donation to the program, please feel free to contact Jody Fisher, Program Manager at fishjody@med.umich.edu or 734-232-2104.

If you are interested in becoming a peer mentor, please complete the quick survey located here to register your interest.

VISIT OUR PATIENT WEBPAGE

The University of Michigan Scleroderma Program has put together a website full of resources for patients, which you can find at www.umich.edu/scleroderma/patients/. You will find helpful information on what scleroderma is, how it is treated, and what to expect at your visits to the doctor.

We have included a recap of the latest in research of scleroderma, which is updated regularly. We hold a yearly Scleroderma Update event in which our researchers give presentations on what’s new in scleroderma research, in layman’s terms. You can find photos and slide decks from these updates on the site, along with links to information on other events, such as Scleroderma Walks and Patient Education conferences.



MEET OUR SCLERODERMA PEER MENTORS


Mary Alore

I was diagnosed with scleroderma in October, 2011. I have been blessed to have the great doctors at the U of M 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 the UMHS. My hope is to help others going through this disease. There is hope that we can share. Nobody should go through this alone.


Sheri Hicks
While I was living in Tucson, 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, to most people, I don’t look sick. 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 am still going to make a difference in people’s lives.

Anita DeVine
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, and lungs) were failing and I was far too complex for that hospital to care for me. I was thankfully transferred by ambulance to U of M.

After a very stormy few weeks, I was diagnosed with acute crisis scleroderma, which I was lucky to survive - thanks to the U of M doctors and staff.


Funded through a grant from the FRIENDS of the University of Michigan Health System.

Department of Internal Medicine
Division of Rheumatology
Scleroderema Program
Rheumatology/Scleroderma Clinics

1500 E. Medical Center Drive
3rd Level Taubman Center
Clinic Areas A & C
Ann Arbor, MI 48109

www.med.umich.edu/scleroderma
Contact a Scleroderma Peer Mentor

Scleroderma Peer Mentors are volunteers who are available to talk to you on the phone, via email or in-person. See contact information above.


Why Peer Mentors?

“To try to help others avoid the feelings I experienced, or at least make them feel like they are not alone!!”
– Sheri Hicks, peer mentor for the Scleroderma Program

“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 DeVine, peer mentor for the Scleroderma Program


Click one of the boxes below to learn more about the various aspects of Scleroderma.
Classifications Lung Involvement Nutrition
Pulmonary Hypertension Raynaud's Phenomenon Renal Involvement
Scleroderma in Children Sexuality & Scleroderma Treatment Guidelines

Back to Learn About Scleroderma - Top of Page

 
   
   

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