The word scleroderma means “hard skin,” but the illness is more complicated than just diagnosing what is on the surface. This chronic autoimmune disease severely affects the skin, blood vessels, and modifies the connective tissue. What is even more baffling about this non-discriminate disease is not knowing where it comes from. While there is no cure for scleroderma, there are treatments that have proven to alleviate some symptoms. Scleroderma has also been known to alter certain parts of the body, harm the heart, kidneys lungs, muscles, skin and joints.
A shrinking mouth size is a common manifestation of scleroderma and is usually the result of skin tightening and thickening of the face, this may not be readily apparent or present in other skin areas. Rheumatologists sometimes measure the largest a patient can open their mouth as part of a regular clinical assessment. Depending on the patient’s medical history and symptoms, they can be seen by an internist, pulmonologist, orthopaedist, dermatologist or rheumatologist. If diagnosed, the physician will then be able to better determine what treatment approach would be most appropriate. Some common treatments include Dpenicillamine, minocycline used to help control skin thickening and lung inflammation.
Treatments like cellcept have emerged as an alternative to cytoxan (treatment used for cancer) as a treatment for scleroderma interstitial lung disease, but it has not been scientifically studied. There are anecdotal or uncontrolled reports that suggest it may be helpful, and its side effect profile makes it an attractive drug (www.sclerodermatrial.org). Scleroderma Lung Study II, a study submitted to the National Institute of Health, is currently waiting approval with hopes that it will help answer the question of cellcept efficacy and toxicity by directly comparing it to cytoxan. There is still a wealth of research to explore.
One expert very familiar with this condition is Dr. Art Theodore, a nationally recognized expert with special interests in systemic sclerosis and interstitial lung disease. Dr. Theodore is Associate Professor of Medicine, Director of Medical Intensive Care Units, Medical Director of Respiratory Therapy, and Director of Medical Education Pulmonary in Critical Care Medicine at Boston University Medical Campus. Also joining the program are Dr. Theodore’s patients, Martha Fisher who has scleroderma primarily centered in her lungs and Marita Lanzilotta also diagnosed with scleroderma, but suffers primarily with severe joint pain and skin tightening. If you have scleroderma, know of someone who has this illness, or are interested in learning more, this program has critical information and resources that will greatly assist you.
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