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Myositis Support and Education Program

Celebrating Over 25 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

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.

Contact Us

Suzan Fischbein, LCSW
Senior Social Work Coordinator II
212.774.7623
fischbeins@hss.edu

Myositis Support Brochure

View our program brochure or download it to your device.

What To Expect When You Come to the Myositis Support Group

  • Meetings are generally held on the second Tuesday of each month. 
  • During the first hour, speakers with expertise in areas that affect people with myositis are invited to present to the group on such topics as physical therapy, managing medications, managing stress and treatments and medications for myositis.
  • During the second hour, there is an open discussion where members share thoughts and feelings about the topic and other related concerns about living with myositis.

Please be aware that, for purposes of social distancing, our program schedules and formats may be changed. Be sure to call the program coordinator in advance for further information or if you have any questions.

For New Members

Before joining the group, please contact the coordinator for a telephone interview (212.774.7623). You will have the opportunity to “meet” the coordinator over the phone. You will also learn more about the group and we will have a chance to learn more about you so that we can best meet your needs.

In Addition to the Group

Benefits of becoming a member of the Myositis Support group include:

  • You will receive monthly mailings. These mailings include a flyer describing the month’s topic and guest speaker. There is also a newsletter that summarizes the previous month’s meeting. For a list of speakers and selected summaries of presentations, please visit us online.
  • You can contact the coordinator for information and referrals about myositis related support and services.

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.”

Updates in Myositis Research (2024)

Suzan Fischbein interviews David Fernandez, MD, PhD, on the latest research in myositis.

Myositis Care at Hospital for Special Surgery

This video provides a glimpse into the lives of three individuals who live with myositis.

Swallowing Dysfunction in Myositis

Presentation by Anaïs Rameau, MD; and Valentina Mocchetti, MS, CCC-SLP
of Weill Cornell Medicine

Facebook Live - Myositis Support Group Panel Discussion

Suzan Fischbein with an HSS patient panel conducted live on Facebook in honor of Myositis Awareness Month, May 1, 2017.

(Note: This video is not viewable in Microsoft Internet Explorer. Please view in an alternate browser, such as Chrome, Firefox or Microsoft Edge.)

National Organization and Government Websites

HSS Website Articles

Visit our main myositis education page, as well as the additinonal articles below.

Books You May Find Useful

  • Donoghue, P.J., & Siegel, M.E. (1992). Sick and tired of feeling sick and tired: living with invisible chronic illness. New York: Norton.
  • Fennell, Patricia (2001). The chronic illness workbook: strategies and solutions for taking back your life. Oakland, CA: New Harbinger Publications, Inc.
  • Fenton, J. (2003). Living with myositis: facts, feelings, and future hopes. London: Thoughtful Publications.
  • Miller, J.E. & Miller, J.E. (1995). When you’re ill or incapacitated: 12 things to remember in times of sickness, injury, or disability. Fort Wayne, IN: Willowgreen Publishing.
  • Miller, James E. (1995). When you’re the caregiver: 12 things to remember when someone you care for is ill or incapacitated. Fort Wayne, IN: Willowgreen Publishing.
  • Zukerman, E. & Ingelfinger, J.R. (1997). Coping with prednisone*: (*and other cortisone-related medicines): it may work miracles, but how do you handle the side effects? New York: St. Martin’s Press.

Myositis Support Program Summaries

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