June is Scleroderma Awareness Month

Questions and answers from the National Institute of Arthritis and Musculoskeletal Diseases:

Q: What is Scleroderma?

A: Scleroderma is a group of diseases that affect connective tissue in the body. This tissue supports your skin and internal organs. Scleroderma involves tissue that become hard or thick. It can also cause swelling or pain in the muscles and joints. Some types of scleroderma lead to hard, tight skin. Other types affect blood vessels and major organs (such as the heart, lungs, and kidneys).

Q: What causes scleroderma?

A: The cause is unknown. You can’t catch it from other people. Doctors don’t think it is passed through genes.

Q: What are the types of scleroderma?

A: Scleroderma’s main types are localized and systemic. Localized means the disease only affects certain parts of the body, often skin tissues, and does not harm major organs. The systemic type affects the skin, tissues under it, blood vessels, and major organs.

Q: Who gets scleroderma?

A: Scleroderma is more common in women than men. Anyone can get it, even children. Most types show up before age 40.

Q: How is scleroderma diagnosed?

A: Doctors diagnose the disease using the patient’s medical history, a physical exam, lab tests and a skin biopsy. Scleroderma may be hard to diagnose, as other diseases have similar symptoms.

Q: How does scleroderma affect the lives of patients?

A: People with scleroderma may worry about the way their skin looks. They may have problems dressing, bathing or handling basic daily tasks. The disease may also affect a person’s relationships and self-esteem.

Q: How is scleroderma treated?

A: A rheumatologist (a doctor who treats arthritis and other diseases that cause swelling in the joints) may lead the healthcare team and refer the patient to health experts who treat problems with skin, kidneys, heart, digestion, lungs, teeth, movement and speech.

Q: Can scleroderma be cured?

A: At present, there is no cure for scleroderma.

Q: How is scleroderma treated?

A: It’s important for patients to follow the doctor’s recommendations about lifestyle, medication and treatment. Symptoms and damage can be reduced. Patients may receive treatment for:

Raynaud’s phenomenon. This condition affects the fingers, feet and hands, making them change color when the person is cold or anxious. Treatment may include medication and exercises.

Stiff, painful joints. Hard skin around the joints can cause discomfort and loss of motion. Treatment includes exercises, medication and learning to do things in a way that puts less stress on the joint.

Skin problems. With scleroderma, collagen builds up in the skin and can make skin stiff and dry. Treatment consists of creams and lotion, using sunscreen, following the healthcare provider’s advice about protecting skin, and regular exercise. Skin changes can also change how the skin looks, affecting a patient’s self-image. Laser treatment and plastic surgery may fix some skin damage and approve the appearance.

Dry mouth and dental problems. Tight skin on the face makes it difficult to care for the teeth, leading to decay and loss. The dentist can suggest ways to protect and clean the teeth.

Gastrointestinal problems. Problems include heartburn, trouble swallowing, diarrhea, constipation and gas. Patients should follow the doctor’s instructions about nutrition and ways to eat that may lessen the problem.

Lung damage. When the lungs are affected, patients may have loss of some lung function, high blood pressure, fatigue, shortness of breath and other breathing problems. Follow the healthcare provider’s advice and get regular flu and pneumonia shots.
Heart problems. Problems include scarring and weakness, swelling of the heart, and abnormal heartbeat. These problems can all be treated.

Kidney problems. Scleroderma can cause very high blood pressure and kidney failure in some people. It’s important that patients check their blood pressure often and notify the doctor right away if it is above normal.

Source:  The National Institute of Arthritis and Musculoskeletal Diseases (www.niams.nih.gov). Visit their website for more information about scleroderma and other diseases of the joints and skin.

Learn More

The Scleroderma Foundation (http://scfo.convio.net), sponsors of Scleroderma Awareness Month, offers information, resources and support for people who are living with this devastating disease.

The information in this article is not intended to replace the advice of your healthcare provider. Talk to your doctor with questions about your condition.