Scleroderma, Vasculitis & Myositis Center of Excellence

Services and Support Programs

Scleroderma Support

• Scleroderma Support Group: These meetings are sponsored by the Tri-State Chapter of the Scleroderma Foundation and are held online. For more information, please visit sclerodermatristate.org or email NYNY@sclerodermatristate.org.
• Scleroderma Fast Track: If you are recently diagnosed with scleroderma and need a fast appointment with a rheumatologist specializing in systemic sclerosis (SSc) complete this form. 
• Scleroderma Buddy Program: This program aims to connect those who struggle with scleroderma, vasculitis or myositis with those who can provide support, which can be particularly helpful for those recently diagnosed. Presently we are only inviting patients seen by HSS physicians to participate in the buddy program. If you wish to participate, please fill out a volunteer consent (to provide support), or if you're looking for support, fill out a support consent form.
• Scleroderma Walk: Members of the SVM Center participate in the "Stepping Out to Cure Scleroderma" events to help raise funds and spread scleroderma awareness. By walking you'll support the Scleroderma Foundation and the hundreds of thousands of adults and children who cope with this disease every day. We encourage you to join us in the efforts by going to www.SteppingOutWalk.org and registering yourself or a team. View the video

Myositis Support and Education Program

Monthly myositis support group meetings sponsored by the Department of Social Work Programs and the Division of Rheumatology at Hospital for Special surgery. The group meets on the 2nd Wednesday of every month at 6:00 pm. Please contact Suzan Fishbein at fischbeins@hss.edu or 212.774.7623 for meeting information.

Educational Programs

We host a number of educational programs to enhance the public’s awareness of scleroderma, vasculitis and related conditions. View footage of past educational forums hosted by Scleroderma Foundation Tri-State, Inc.

Social Work Services

Social Workers are available to address your and your family's individual needs around a new diagnosis, or any related emotional, social, or practical concerns that can arise. We offer supportive counseling and referrals to community resources through Mary Carey, Senior Social Work Manager, Rheumatology, 212.774.2737 or careyma@hss.edu. For further information, please visit the Department of Social Work Programs website.

Occupational Therapy Services

Occupational therapy provides individualized treatment programs designed to improve dexterity, coordination, mobility and strength of the upper extremities. This specialty focuses on maximizing independence in daily activities to facilitate independence and ensure optimal level of function at home and on the job. The occupational therapists at the HSS Hand Therapy Center provide quality care for patients.

Our occupational therapists are experienced in managing patients with scleroderma, vasculitis, and myositis and are trained to evaluate, assess musculoskeletal function and functional performance. If your hands make it difficult to perform everyday simple tasks such as:

• Brushing your teeth and hair
• Opening a jar
• Pouring a cup of coffee
• Using a knife and fork
• Using a key
• Buttoning or zipping a jacket.

An occupational therapist can recommend new ways of doing things or devices to make tasks easier, and help make you more independent. Occupational therapists can also prescribe specific exercises to help stretch the tissue, and maintain motion. For more information or to set up an appointment, please contact 212.606.1660.

Nutrition

Carol Streep, MS, RD, CDN, LDN
Carol is a Clinical Nutritionist with the Department of Food & Nutrition Services at HSS. She received her Master of Science in Clinical Nutrition from New York University, gaining extensive experience in medical nutrition therapy. Carol works with a broad spectrum of conditions – focusing on a wide array of musculoskeletal conditions and rheumatic diseases, as well as weight management and bone health. Carol believes in a personalized approach to counseling, listening to her patient’s unique needs to create a well-balanced, sustainable nutrition plan.

Department of Spiritual Care

Scleroderma, Vasculitis, and Myositis are serious diseases which can be life threatening and life altering. The impaired quality of life imposed by these diseases as well as the uncertainties they pose for future good health are a hardship for both the patient and their family. Seeking emotional/spiritual support can help with the management of your care.

As members of the health care team, the professional chaplains in the Hospital's Department of Spiritual Care can help improve patient and family outcomes by identifying and addressing important beliefs and values; meeting spiritual needs; and reducing spiritual distress and anxiety for all persons regardless of faith, belief or culture.

The Department of Spiritual Care is located at the Main Hospital, 535 East 70th Street, New York, NY 10021 in 9W Room 105. Please call 212.606.1757 for more information.

Articles and Education

Webinars and Presentations

• What Patients with Scleroderma Should Know About Two Recently Approved Treatments for Scleroderma Lung Disease featuring Kimberly (Showalter) Lakin, MD, MS
• COVID-19 Vaccine and Autoimmune Conditions featuring Robert F. Spiera, MD (view recap email)
• Top 10 Questions for Patients with Scleroderma During Pandemic featuring Jessica K. Gordon, MD
• Ways to Cope with Anxiety and Isolation During the COVID-19 Pandemic featuring Juliette Kleinman, LCSW, ACSW and Susan Rodriguez, LCSW - View Slides

Scleroderma, Vasculitis and Myositis Articles

Our articles are written or edited by doctors, clinicians and specialists in their field. Review our articles below to learn more about each illness. 

Scleroderma

Vasculitis

Myositis