Scleroderma is a rare, chronic autoimmune disease that causes skin to thicken and tighten. For some patients, it also causes life-threatening damage to internal organs. Although there's no cure for the disease, its impact on people's lives can be reduced.
The systemic forms of scleroderma cause fibrosis (scar tissue) to be formed in the skin and/or internal organs. The fibrosis eventually causes the involved skin or organs to harden, which is why scleroderma is popularly known as the "disease that turns people into stone."
There are two main types of scleroderma, localized and systemic. The systemic forms can affect any part of the body (skin, blood vessels, and internal organs.) They are also referred to as "systemic sclerosis" plus other terms such as diffuse, limited, CREST, and overlap. When systemic scleroderma affects the skin, it can cause the skin – most commonly on the hands and/or face – to harden. With affecting the blood vessels, it can cause Raynaud's phenomenon. When it affects the internal organs, it may cause disability or even death.
The localized forms are morphea and linear. They affect only the skin (and sometimes the underlying tissues) but do not affect the internal organs, or reduce one's life expectancy in any way.
Diffuse scleroderma is when skin tightening also occurs above the wrists or elbows. Limited scleroderma is when skin involvement is limited to the hands (although the face and neck may also be involved.) CREST stands for Calcinosis, Raynaud's, Esophagus, Sclerodactyly, and Telangiectasia. CREST may occur alone, or in combination with any other form of scleroderma (or even other autoimmune diseases) such as CREST with limited scleroderma, or CREST with lupus. If a scleroderma patient also has any other autoimmune disease (such as lupus, rheumatoid arthritis, etc.) it is referred to as overlap; as in "Diffuse scleroderma in overlap with lupus." Scleroderma symptoms can also be a part of Mixed Connective Tissue Disease (MCTD), or Undifferentiated Connective Tissue Disease (UCTD).
When any form of scleroderma (either localized or systemic) occurs in children, it is also called Childhood Scleroderma or Juvenile Scleroderma.
Scleroderma afflicts an estimated 150,000 to 500,000 Americans, primarily females who are 30 to 50 years old at onset. The overall occurrence is 30 people per 100,000 and the ratio of women to men is about four to one. Average age at diagnosis is significantly younger for blacks than for whites, and black patients are almost twice as likely to have diffuse disease than whites. Median survival is 11 years. [Wiley InterScience. Arthritis Rheum. 2003 Aug;48(8): pp.2246-55]
The cause of scleroderma is unknown. Some cases of scleroderma have been linked to chemical exposures.
Proper diagnosis of scleroderma is often long and difficult, since it is a rare disease which few doctors are well-versed in, and in the early stages it may resemble many other connective tissue diseases, such as systemic lupus erythematosus, polymyositis, and rheumatoid arthritis, just to name a few.
Often the diagnostic uncertainty and frustration takes a huge toll on the psychological well-being of the patient, who sometimes describe their journey to diagnosis as being by far the most difficult part of their illness. Many other diseases may have a scleroderma-like appearance. In these diseases, abnormalities of nail folds, visceral involvement and immunological changes are usually different from those observed in systemic scleroderma. [PubMed. Rev Prat. 2002 Nov 1;52(17): pp.1884-90]
At present, there are no proven treatments or cure for scleroderma of any form. However, there are effective therapies for many of the symptoms.
There are several "natural" things you can do for systemic scleroderma.
For relief of symptoms such as Raynaud's and heartburn, you may want to particularly avoid:
Many herbs and over-the-counter medications can interact with prescription medications, and many of them make scleroderma symptoms worse. Even simple over-the-counter cold remedies often have ingredients that can trigger Raynaud's or heartburn in systemic scleroderma patients.
The immune system does not need to be improved in scleroderma, because it is already overactive (and not underactive, as in AIDS.) Doing things that enhance the immune system can actually make scleroderma worse in some cases, as it gives the body more power to attack itself.
Research shows that Raynaud's can cause an abnormal processing of certain vitamins and minerals, leading to worsening scleroderma. So excessive intake of any vitamin is to be avoided.
In the past, only the worst cases of scleroderma were diagnosed, thus leading to the widespread belief that systemic scleroderma was always progressive and fatal. Now that the full range of types and severity of scleroderma are being recognized and diagnosed, there is increasing awareness that many people have a milder type of illness with a much better long term outlook.
Content on this page reprinted with permission from the nonprofit International Scleroderma Network (ISN) at sclero.org, which is the stellar world resource for scleroderma and related illnesses, like Raynaud's and pulmonary hypertension. All rights reserved.
In an older study, later confirmed by others, Arthur Scherbel, MD, of the Department of Rheumatic Diseases and Pathology at the Cleveland Clinic Foundation, used DMSO on 42 scleroderma patients who had already exhausted all other possible therapies without relief. The investigators concluded that 26 of the 42 showed good or excellent improvement. Histotoxic changes were observed together with healing of ischemic ulcers on fingertips, relief from pain and stiffness, and an increase in strength. The investigators noted, "It should be emphasized that these have never been observed with any other mode of therapy." [Ann NY Acad Sci 141: pp.613-29, 1967]
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