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WHAT YOU NEED TO KNOW:
What is scleroderma?
Scleroderma is a long-term disease that causes hardening and tightening of your skin and connective tissues. Connective tissues support your skin and surround your organs. Scleroderma is an autoimmune disease. This means your immune system mistakes healthy body tissue for a disease and attacks the healthy tissue. The 2 types of scleroderma are localized (mild) and systemic (severe).
What increases my risk for scleroderma?
The cause of scleroderma is unknown. The following may increase your risk:
- Certain medicines, such as bleomycin
- Exposure to chemicals or toxins (poisons), such as organic solvents, vinyl chloride, or silica dust
- Family history of scleroderma
- Quartz mining or quarrying
- Use of rapeseed oil
What are the signs and symptoms of scleroderma?
Mild scleroderma may only affect the skin on your fingers, hands, toes, and face. Severe scleroderma may spread to skin on your midsection, or your organs, blood vessels, joints, and muscles. You may have any of the following:
- Cold or blue fingers and toes, or skin color changes
- Swelling or thickening of your skin
- Visible blood vessels or spider veins in your skin
- Dry mouth or trouble swallowing
- Weight loss, nausea, vomiting, or diarrhea
- Acid reflux or stomach pain
- Muscle weakness or loss of movement
- Joint pain or stiffness
How is scleroderma diagnosed?
- Blood tests may be used to see if your immune system is producing more antibodies (germ fighters) than it should. These tests will help confirm your condition.
- A nail fold capillary microscopy is a small microscope with a light on the end that is held up to your fingertips. Your caregiver will use this to see if you have blood flow problems in your fingers.
- A skin biopsy may be used to check your skin for thickening or blood vessel changes.
- A urine test may be used to show blood and protein levels in your urine. This will show any kidney problems.
- A GI x-ray may be used to take pictures of your digestive system. This will show if your body is digesting food the way it should. It may also show if you have esophagus, stomach, or bowel problems.
How is scleroderma treated?
There is no cure for scleroderma. You may need any of the following medicines to help relieve your symptoms:
- NSAIDs decrease swelling, pain, and fever. NSAIDs are available without a doctor's order. Ask your caregiver which medicine is right for your condition. Ask how much to take and when to take it. Take as directed. NSAIDs can cause stomach bleeding and kidney problems if not taken correctly.
- Ointments may be used to help relieve your skin thickness or hardness. You will need a doctor's order for these ointments. They may also be used to help prevent skin infections and ulcers.
- Antacids may be used to help reduce acid reflux in your throat and stomach.
- Antibiotics may be used to help prevent an infection in your bowels or skin caused by bacteria.
What are the risks of scleroderma?
- Scleroderma may cause permanent skin color changes or extreme skin tenderness. Muscle tightness may cause your hands to curl inward. Your body may start to reabsorb the bone in the tips of your fingers and toes. You may develop ulcers on your fingertips and toes caused by decreased blood flow. The ulcers may not heal, which may cause skin tissue death called gangrene. This may lead to removal of the damaged fingers and toes.
- Scleroderma may spread to your digestive system. You may not be able to digest food properly. Scleroderma may also spread to your kidneys and lead to kidney failure. It may spread to your bowels and cause constipation or a hole in your bowel. Scleroderma may also spread to your lungs and heart and decrease or block blood flow in these organs. This may cause extreme high blood pressure around your lungs, breathing trouble, or heart rhythm problems. These risks may be life-threatening. Severe scleroderma may cause your heartbeat or breathing to stop completely.
How do I manage my symptoms?
- Do not smoke. If you smoke, it is never too late to quit. Smoking may make your blood flow problems worse. Ask for information about how to stop smoking if you need help.
- Eat healthy foods , such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Ask if you need to increase the number of calories you eat, or if you need to be on a special diet.
- Reduce acid reflux. Do not eat late at night. Keep the head of your bed elevated while you sleep, or sleep in a recliner. These actions can help keep stomach acid from flowing up your esophagus.
- Go to physical therapy sessions if your caregiver orders physical therapy for you. Physical therapists can teach you exercises to help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.
How do I care for my skin?
- Avoid cold temperatures and stress. Cold air and stress may make your skin symptoms worse. Try to limit your exposure to these conditions. Wear warm clothes and gloves, and limit your time in air conditioning.
- Clean and cover your skin wounds. Carefully wash your wounds with soap and water. Dry the area and put on new, clean bandages as directed. Change your bandages when they get wet or dirty.
- Use over-the-counter lotion, ointments, and bath oils. These will help prevent skin dryness and cracking, and may help heal ulcers.
- Use heat to soothe your skin and joints. Heat helps decrease pain and joint stiffness. Apply heat to the area for 20 to 30 minutes every 2 hours for as many days as directed.
- Avoid caffeine and medicines that make you sleepy. This may help improve your symptoms of skin tightening, thickness, or joint pain.
Where can I find more support and information?
- Scleroderma Foundation
300 Rosewood Drive
Danvers , MA 01923
Phone: 1- 978 - 463-5843
Phone: 1- 800 - 722-4673
Web Address: www.scleroderma.org
- National Kidney Foundation
30 East 33rd Street
New York , NY 10016
Phone: 1- 212 - 889-2210
Phone: 1- 800 - 622-9010
Web Address: http://www.kidney.org
When should I contact my caregiver?
Contact your caregiver if:
- You have bruises that you cannot explain.
- You have wounds that will not heal, or your skin tenderness increases.
- Your muscle or joint tightness worsens, or your fingers begin to curl.
- You feel full after you eat only small amounts, or you bloat after you eat.
- You lose your appetite, or you lose weight without trying.
- You have nausea or are vomiting.
- You have questions or concerns about your condition or care.
When should I seek immediate care?
Seek care immediately or call 911 if:
- You have trouble urinating, or you urinate less than usual.
- You have trouble having a bowel movement, or you lose control of your bowel movements.
- The wounds on your fingers or toes turn black.
- You have trouble swallowing.
- Your heart is beating faster than usual.
- You have chest pain or trouble breathing.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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