Skin problems:
When too much collagen builds up in the skin, it crowds out sweat and oil glands, causing the skin to become dry and stiff. If your skin is affected, you may need to see a dermatologist. To ease dry skin, try the following:
Apply oil-based creams and lotions frequently, and always right after bathing.
Apply sunscreen before you venture outdoors, to protect against further damage by the sun's rays.
Use humidifiers to moisten the air in your home in colder winter climates.
Avoid very hot baths and showers, as hot water dries the skin.
Avoid harsh soaps, household cleaners, and caustic chemicals, if at all possible. If that's not possible, be sure to wear rubber gloves when you use such products.
Exercise regularly. Exercise, especially swimming, stimulates blood circulation to affected areas.
Gastrointestinal (GI) problems:
Systemic sclerosis can affect any part of the digestive system. As a result, you may experience problems such as heartburn, difficulty swallowing, early satiety, or intestinal complaints such as diarrhea, constipation, and gas. In cases where the intestines are damaged, your body may have difficulty absorbing nutrients from food. Although GI problems are diverse, here are some things that might help at least some of the problems you have:
Eat small, frequent meals.
Raise the head of your bed with blocks, and stand or sit for at least an hour (preferably two or three) after eating to keep stomach contents from backing up into the esophagus.
Avoid late-night meals, spicy or fatty foods, and alcohol and caffeine, which can aggravate GI distress.
Chew foods well and eat moist, soft foods. If you have difficulty swallowing or if your body doesn't absorb nutrients properly, your doctor may prescribe a special diet.
Ask your doctor about prescription medications for problems such as diarrhea, constipation, and heartburn.
Lung damage:
About 10 to 15% of people with systemic sclerosis develop severe lung disease, which comes in two forms:
pulmonary fibrosis (hardening or scarring of lung tissue)
pulmonary hypertension (high blood pressure in the artery that carries blood from the heart to the lungs).
Treatment for the two conditions is different. Pulmonary fibrosis may be treated with drugs that suppress the immune system. Pulmonary hypertension may be treated with drugs that dilate the blood vessels.
Regardless of the problem or its treatment, your role in the treatment process is essentially the same. To minimize lung complications, work closely with your medical team. Do the following:
Watch for signs of lung disease, including fatigue, shortness of breath or difficulty breathing, and swollen feet. Report these symptoms to your doctor.
Have your lungs closely checked, using standard lung-function tests, during the early stages of skin thickening. These tests, which can find problems at the earliest and most treatable stages, are needed because lung damage can occur even before you notice any symptoms.
Get regular flu and pneumonia vaccines as recommended by your doctor.
Heart problems:
About 15 to 20% of people with systemic sclerosis develop heart problems, including scarring and weakening of the heart, inflamed heart muscle, and abnormal heart beat. All of these problems can be treated. Treatment ranges from drugs to surgery, and varies depending on the nature of the condition.
Kidney problems:
About 15 to 20% of people with diffuse systemic sclerosis develop severe kidney problems, including loss of kidney function. Because uncontrolled high blood pressure can quickly lead to kidney failure, it's important that you take measures to minimize the problem. Things you can do:
Check your blood pressure regularly and, if you find it to be high, call your doctor right away.
If you have kidney problems, take your prescribed medications faithfully.
How Can I Play a Role in My Health Care?
Although your doctors direct your treatment, the relationship between you and your doctors is a partnership. Here are some actions you can follow to help you live well with scleroderma:
Educate yourself. (knowledge is power)
Seek support. (find mutual support from others)
Build your health care team. (doctors and others)
Be patient. (diagnosis can be difficult)
Communication is key. (promptly report any problems or changes in your condition)
Solve difficult issues. (positive coping strategies)
Is Research Close to Finding a Cure?
No one can say for sure when--or if--a cure will be found. Until then, research is looking for better ways to:
treat symptoms
prevent organ damage
improve quality of life for people with scleroderma
In recent decades, research has also provided new clues to understanding the disease, which are important steps toward prevention or cure.
Related Resources
Scleroderma (Systemic Sclerosis)
Scleroderma Screening Quiz
Scleroderma: Test Your Knowledge
Source: NIAMS, Handout on Health: Scleroderma, 5/2001
