Scleroderma Program

Overview

The Massachusetts General Hospital Scleroderma Program specializes in the care of patients with scleroderma and related fibrosing conditions. Led by Flavia Castelino, MD, the Scleroderma Program delivers state of the art multi-disciplinary care in the evaluation and treatment of patients with scleroderma and related conditions. We are committed to improving scleroderma patient care by developing better diagnostic and treatment options and performing innovative research to advance our understanding of what causes scleroderma.

What Is Scleroderma?

Scleroderma, or systemic sclerosis, is an autoimmune disease that affects the skin and internal organs, and can lead to thickening, or fibrosis. Scleroderma is a progressive disease that can produce complications ranging from mild to severe.

There are two main sub-types of scleroderma or systemic sclerosis: limited and diffuse scleroderma. These are primarily distinguished by the degree of skin involvement.

Our rheumatologists specialize in treating systemic sclerosis. Symptoms of scleroderma vary from one person to the next, but some of the more common symptoms of scleroderma may include: color changes to the fingers on exposure to cold (called Raynaud's phenomenon), skin thickening, pulmonary hypertension, scarring of the lungs leading to shortness of breath (called pulmonary fibrosis), problems of the gastrointestinal tract including heartburn or difficulty swallowing, and kidney problems.

About This Program

Our program is headquartered in the Yawkey Building on the Mass General main campus under the leadership of Dr. Flavia Castelino. Program physicians Flavia Castelino, MD, Marcy Bolster, MD, Sara Schoenfeld, MD, and Cory Perugino, DO will apply their clinical and research expertise in scleroderma to develop a personalized care plan for you.

At your first appointment, you will undergo a complete medical history and physical examination. Your physician will look for key signs of scleroderma, such as skin thickening/hardening and blood-vessel changes. Your physician may also recommend blood tests or other diagnostic tests, such as a pulmonary function test (breathing test), imaging studies such as a CT scan of your lungs, or an echocardiogram (ultrasound of your heart).

Although there is currently no known cure for scleroderma, making an early diagnosis is important to help slow down the disease progression, improve symptoms and monitor for other organ involvement, such as pulmonary hypertension and pulmonary fibrosis. In addition, there are a number of new treatment options available, and your doctor may recommend a trial of one of these medications.

A Personalized Treatment Plan

Your disease severity and extent of organ-system involvement will determine your prognosis and treatment plan.

Treatments may include:

• Immunosuppressive medications to control the body's immune response
• Medications that treat specific symptoms of scleroderma, such as pulmonary hypertension, lung disease, heartburn or Raynaud's phenomenon
• Occupational and Physical therapy to promote joint mobility and muscle strength

Most of our patients receive lifelong care at MGH. The frequency of visits will vary based on your symptoms. At each visit, you can expect to meet with your rheumatologist, who will then coordinate care with other specialists. If you do not live in the area, we can co-manage care with your local physician and see you as needed to monitor your health.

Multi-disciplinary Care

At MGH, we take a multi-disciplinary approach to managing a multi-system disease like scleroderma.

Depending on your symptoms, our rheumatologists will coordinate your treatment with other world-class specialists at MGH, including:

• Pulmonologists in the MGH Interstitial Lung Disease Program and MGH Pulmonary Hypertension Program
• Cardiologists
• Dermatologists in the Dermatology-Rheumatology Connective Tissue Disease Program
• Gastroenterologists
• Nephrologists
• Orthopedic surgeons
• Occupational and physical therapists

Our Research

Although there is no known cure for scleroderma, research in underway at the MGH to find therapies that will improve the quality of care for our patients. Members of the MGH Rheumatology Unit work with scientists in the Center for Immunology and Inflammatory Diseases to better understand scleroderma and develop new treatments.

The Perugino lab, led by Dr. Cory Perugino, investigates the antigens and adaptive immune cells that drive autoimmune fibrotic diseases, with a particular focus on systemic sclerosis.

Our experts are advancing the field of scleroderma through innovative studies. We perform a wide array of research, including clinical trials, observational and translational studies to better understand and manage scleroderma.

Browse open clinical trials

Research Studies with Active Enrollment

We are actively enrolling patients in the following research studies.