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Photo of Myositis Support Group members and Dr. David R. Fernandez.

Myositis Program

Myositis Support and Education Program

Celebrating Over 20 Years of Myositis Support

The Myositis Support Group was founded in 1997 in response to patients’ expressed desire to meet other people with this rare, chronic disease. Our mission is to enhance coping, reduce isolation, and increase understanding of the inflammatory myopathies (dermatomyositis, inclusion body myositis and polymyositis) by creating a community for mutual support and education. Group members share strategies to help cope with these changes through open discussions about relevant issues. The Group has over 155 members and is led by a licensed professional social worker serving those with myositis and their friends and family.

Presentations by myositis care experts are followed by informal discussion. A summary of each meeting is mailed to all group members, as part of a monthly newsletter. We recognize that not everyone can attend meetings.

Please be aware that our program formats have changed to observe social distancing safety guidelines. Be sure to call or email for further information or if you have any questions.

The Impact of Myositis

Myositis is a rare, chronic, autoimmune disease of the muscle that can be challenging to diagnose and can be an isolating experience for those affected. Having myositis may affect individuals not only physically, but also emotionally, socially, and financially.

  • Myositis can be challenging to diagnose. After diagnosis, many feel the frustration of dealing with a rare disease. Neither they, nor friends and family, have heard of the disease and are often left wondering where they can turn for help. It can be a lonely experience.
  • After diagnosis, the impact of living with a rare, chronic illness remains: it is difficult to find others who can share this experience and family and friends may have a difficult time understanding the limitations and manifestations of this often “invisible” disease.
  • Myositis can impact an individual’s self-esteem, relationships, and career.

In Our Members’ Own Words

“I get so much from attending the group. I wish I could come more often.”
“Being part of the group helps me feel that I am not alone.”
“The group is a safe place where I can open up and share my frustrations.”
“Thank you for continuing to send summaries to those of us who can’t attend meetings.”
“The group is, and always will be, an important part of my life.”

Contact Us

Suzan Fischbein, LCSW
Myositis Support Group Coordinator
212.774.7623
fischbeins@hss.edu

Myositis Support and Education Program Summaries

 

Myositis Support Brochure

View our program brochure or download it to your device.