Myositis Program - About Us

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.

Our Mission

The mission of the Myositis Support Group 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.

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.

Contact Us

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