Scleroderma, Vasculitis & Myositis Center

Patient Education and Support Programs

Scleroderma Support Group

Monthly scleroderma support group meetings sponsored by the Tri-State Chapter of the Scleroderma Foundation are held at Hospital for Special Surgery. The group meets on the 1st Wednesday of every month at 6:00 pm at HSS.

Support Group Leaders:
Chanell Gatewood - 917.825.6212
nyc@scleroderma.org

Sclero-Men Scleroderma Support Group for Men

Sponsored by the Scleroderma Foundation, each of our meetings will feature open discussion, a guest speaker or DVD presentation on topics that provide information and skills needed to help cope with chronic illness. We hope you will join us as we provide an atmosphere of camaraderie and mutual support. Learn more

Myositis Support Group

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 6:00pm. Please contact Suzan Fishbein (fischbeins@hss.edu) before attending your first meeting.

Support Group Leaders:
Suzan Fischbein, LMSW - 212.774.7623
fischbeins@hss.edu

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 Emily Dorfman, Rheumatology Social Worker, 646.797.8374 or dorfmane@hss.edu and Jacqueline Lefokowitz, Social Work Manager, 212.774.2541 or lefkowitzj@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:
 
Aviva Wolff, OTR, CHT
Section Manager, Hand Therapy Dept
212.606.1660
WolffA@hss.edu
 
John Indalecio, OTR/L, CHT
Occupational Therapist
212.606.1660
IndalecioJ@hss.edu

Walks

Members of the HSS Scleroderma, Vasculitis & Myositis Center participated in promotional videos to raise funds and spread scleroderma awareness. View the video

The Scleroderma Foundation sponsors "Stepping Out to Cure Scleroderma" nationwide walks that physicians, patients and supporters are encouraged to participate in. In 2012, these walks raised $1.44 million. By walking you'll support the Scleroderma Foundation and the hundreds of thousands of adults and children who cope with this disease every day.

View photos of the 2010 Scleroderma Walks.

Educational Programs

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

Department of Pastoral 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 HSS's Department of Pastoral 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.

Contact the Department of Pastoral Care:
535 East 70th Street
New York, NY 10021
9W Room 105
Tel: 212.606.1757

Off the Press 

  • New Therapy for Vasculitis May Help Patients Avoid Infertility and Cancer
    Researchers have reported that Rituximab, a drug that is FDA approved to treat B cell lymphoma and rheumatoid arthritis, can also treat severe vasculitis as well as the current standard therapy. Infertility and the development of cancers have been associated with the traditionally used medication, cyclophosphamide, and the risk of these complications is expected to be much lower with Rituximab. The news will be published in the July 14 issue of the New England Journal of Medicine.
  • Rituxan Equally Effective as Standard Therapy for Treating Vasculitis
    Researchers have demonstrated that Rituxan can treat severe antineutrophil cytoplasmic antibodies (ANCA)-associated vasculitis as effectively as cyclophosphamide.
  • Cancer Drug May Help Scleroderma
    A new study suggests that the cancer drug Gleevec may benefit people with scleroderma, a chronic connective tissue disease.
  • Treatment for Scleroderma?
    A drug currently approved to treat cancer could provide the first treatment for scleroderma, according to researchers.  Gleevec has shown to be effective in treating those with the chronic connective tissue disease.
  • Cold Hands Explained
    CBSí Julie Chen speaks with rheumatologist Dr. Robert Spiera about Raynaud's Syndrome.
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