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Best Way to Treat Scleroderma?

Are you aware of any treatments or experimental drugs for CREST Syndrome? Is there a medical center in the U.S. that specializes in this area?

A
Answer (Published 2/2/2004)

CREST Syndrome is a form of scleroderma, a disease which stems from the overproduction and accumulation of collagen, a connective tissue protein. Scleroderma is an autoimmune disorder in which, for unknown reasons, the immune system attacks parts of the body’s own circulatory system, leading to fibrosis and scarring. It primarily affects tiny blood vessels and can develop in almost any organ.

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You can be diagnosed with CREST Syndrome if you have any two of the following five symptoms of this particular form of scleroderma:

  • Calcinosis: The formation of tiny deposits of calcium on the skin. These look like little hard white areas, usually on the elbows, knees or fingers.
  • Raynaud’s disease: The spasm of tiny blood vessels in the fingers, toes, nose, tongue or ears upon exposure to very cold (or hot) temperatures or (sometimes) in response to stress. The affected areas turn white or bluish and may be painful.
  • Esophageal disease: A malfunctioning of the muscle of the lower part of the esophagus, which then allows stomach acid to flow back into the esophagus, causing heartburn and inflammation. This can result in scarring and may interfere with swallowing food.
  • Sclerodactyly: A thickening and tightness of the skin on the fingers or toes that limits motion.
  • Telangiectasia: The development of spidery, red patches on the face, hands, and in the mouth, due to abnormal proliferation of tiny blood vessels.

You might look into Chinese medicine for treatment of CREST Syndrome. I also would recommend taking the anti-inflammatory herbs ginger and turmeric as well as adopting an anti-inflammatory, plant-based diet with an emphasis on omega-3 fatty acids in the form of cold-water fish, fortified eggs, walnuts and flax. You may also consider taking a fish oil supplement.

My colleague, hypnotherapist Steve Gurgevich, Ph.D., notes that Raynaud’s disease is quite responsive to such mind/body methods as self-hypnosis and biofeedback training to "warm" the hands. Using these methods, you can train or condition the blood vessels in your hands and feet to dilate, which allows more blood to circulate. Mind/body methods of relaxation also can help to relieve tension in the esophagus to facilitate swallowing foods. If you have problems swallowing, Dr. Gurgevich suggests sitting back, breathing easily and regularly through the nose, extending your arms with your hands palm up on your thighs or lap, closing your eyes and visualizing the relaxation of the smooth muscles of the esophagus as they allow the food to move down into the stomach.

Such mind/body approaches as self-hypnosis and guided imagery can work to calm the immune system, too.

You also might want to explore the National Institutes of Health (NIH) clinical trials of scleroderma treatments currently recruiting patients. To find out if any might be suitable for you, log on to http://clinicaltrials.gov/ct/gui/action/FindCondition?ui=D012595&recruiting=true. To locate a scleroderma research and treatment center near you, go to: http://www.scleroderma.org/medical/centers.htm

Andrew Weil, M.D.

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