Support for Inflammatory Myopathies
Inflammatory muscle diseases such as dermatomyositis, polymyositis, and inclusion body myositis are chronic conditions that are usually managed over the course of a lifetime.
People with dermatomyositis and polymyositis can be treated with medication. Some people recover completely, and others may notice that their symptoms disappear for long stretches of time, which is referred to as remission. To reach these results, people often must be treated for several months with immune therapy, such as immunosuppressants or immunoglobulin.
For children with dermatomyositis, the Sala Institute for Child and Family Centered Care, part of Hassenfeld Children's Hospital of New York at NYU Langone, provides support resources throughout diagnosis and treatment. These include child life services, social work, and other health and support services.
Neuromuscular Disease Center
NYU Langone’s Neuromuscular Disease Center is sponsored by the Muscular Dystrophy Association and offers long-term care for children and adults with inflammatory muscle diseases. It offers diagnosis and treatment on an outpatient basis. Children with inflammatory myopathies receive care at the Neuromuscular Disease Center through Hassenfeld Children's Hospital.
The team at the center includes physicians, physical and occupational therapists, nutritionists, and social workers. They help you to manage symptoms, and provide care according to your needs. A person with polymyositis who is having trouble swallowing, for example, may work with one of our physical therapists. Someone with dermatomyositis who is having breathing problems, however, may visit one of the clinic’s pulmonologists, doctors who specialize in lung function.
Physical therapy can help people with inflammatory muscle diseases to regain their strength and range of motion. It may also prevent any weakness from progressing. A physical therapist can help you keep your muscles and joints flexible by creating a strengthening and stretching routine tailored to your needs.
Specialists at NYU Langone’s Rusk Rehabilitation offer physical therapy on an outpatient basis to people with muscle diseases. You may initially visit a physical therapist several times per week. Eventually you’ll learn to perform some or all of the exercises at home.
People with inclusion body myositis usually experience a gradual weakening of the leg muscles. They may eventually need a mobility aid, such as a cane or walker. The doctors at NYU Langone can recommend mobility aids to help you stay active and maintain your independence.