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Accurate Vagueness

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The OLPA (Office of Legislative Policy and Analylis) site has the appropriate sub-title under their name: Linking the National Institutes of Health and Congress. This key linking is not only desirable between the NIH and congress but within the scleroderma research community which demands a unified think tank and measures that utilize those resources.

Take a look here and see the efforts of some to promote scleroderma research which is more integrated and collaborative. Some of the points brought forward were additional methods for improving disease surveillance and working more closely with private organizations to find a cure for scleroderma. To read more on this pending legislation (this may have already been passed) go to:


I think that the description here is profoundly accurate in its vagueness, as if that makes any sense. It describes scleroderma as being a symptom of a "group" of diseases.

- Though it is often referred to as if it were a single disease, scleroderma is really a symptom of a group of diseases that involve the abnormal growth of connective tissue, which supports the skin and internal organs. It is sometimes used as an umbrella term for these disorders.

The very fact that scleroderma can't be nailed or pinned down to one universal theme beyond hard skin and even that is under scrutiny with sine scleroderma identifies it as as not just one but many monsters. Its very varied properties that change like a chameleon even within the individual make its wholeness as a single disease seem impossible to classify.

It is more likely that there is much more to scleroderma than previously thought. Personally, I wonder: Since scleroderma can be limited to just the skin and not progress to the organs, doesn't it make sense that the reverse could hold true? Are there more people than previously thought who like me have at one point been given the diagnosis of the ambiguous Mixed Connective Tissue Disease? How many people are suffering but have no good proof of their illness beyond the nucleolar ANA that is much too high to be normal and Raynaud's and any number of symptoms that aren't explainable?

According to Professor J.C.W. Edwards, Professor in Connective Tissue Medicine at the University College in London, it's not uncommon for rheumatic illnesses to exist without a well defined name.

- Perhaps the most important fact is that antibodies can cause problems without causing any true inflammation. There may be no swelling, even if there is pain and fatigue, and the ESR test may be normal.

Professor Edwards has a lot to say about what he calls Borderline Rheumatic Illness and explains how we now know that it is common to suffer from an illness which cannot be given a definite name.
Professor Edwards' article is listed on the ISN's Difficult Diagnosis page.

Albert Einstein said: "If you can't explain it simply, you don't understand it well enough."

With terms like Umbrella, CREST, Mixed, Undifferentiated, Latent Lupus, Sjogren's Syndrome and more, it's easy to see that Einstein was right.



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