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Understanding Scleroderma: Uncovering the Layers of a Chronic Disease

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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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EXPERTS & GUESTS:
Arthur Theodore, M.D.
Director of the Medical Intensive Care Unit, Boston University School of Medicine
Dr. Theodore holds an appointment with the Boston University School of Medicine as an Associate Professor of Medicine. As Director of the Medical Intensive Care Unit he spends the majority of his time attending in and administering this unit and has recently established an Interventional Pulmonary Service. Dr. Theodore also actively attends on the pulmonary consult service and participates in... more >

Martha Fisher,
Scleroderma patient
As is true for many patients, when Martha discovered that she had scleroderma, it soon became a lengthy and complicated process. She noticed the first respiratory symptoms 10 or 11 years ago, but it wasn’t until six years ago that Martha obtained a definite diagnosis. Before scleroderma, Martha was an active individual with virtually no physical limitations. With scleroderma, she... more >

Marita Lanzilotta,
Scleroderma patient
Ms. Lanzilotta was diagnosed with scleroderma about 7 years ago at the age of 40. Diagnosis was difficult because of the lack of exact testing for the disease. She saw several different doctors early on including neurologists, dermatologists and rheumatologists, to whom she described her symptoms to no avail. Finally, after about a year of searching and feeling extremely frustrated,... more >

TRANSCRIPT:

  1. Introduction
  2. Scleroderma Symptoms and Diagnosis
  3. What is Scleroderma?
  4. Lung and Other Organ Involvement
  5. Life Expectancy
  6. Support Available
  7. Treatments and Clinical Trials
  8. Pulmonary Hypertension in Scleroderma Patients
  9. Remission in Scleroderma
  10. Prognosis and Genetic Connections
  11. Future Clinical Trials
  12. Surgery as an Option?
  13. Living with Scleroderma

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