Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 09-08-02 22:37
Bill,
I don't know who originated the snowflake/sarcoidosis analogy, but the Sarcoid Networking Association in Washington uses the snowflake to symbolize sarcoidosis.
In a previous post, I wrote:
Sarcoid patients encounter obstacles to being treated as a whole person, although sarcoidosis is defined as a systemic granulomatous (inflammatory) disease. If we are told that we have anything that ends in the suffix '-itis,' which means an inflammatory disease, such as pleuritis, sinusitis, tendonitis, arthritis, why wouldn't we consider a relationship to sarcoidosis? Read this entire description of 'inflammation.' Would you say this is a fairly precise description of sarcoidosis, as you experience it? I would.
The disease sarcoidosis has been said to be "like a snowflake" in that the manifestation of inflammatory symptoms is unique in each patient. Looking beyond the surface, though, just as all snowflakes are made of water molecules, the characteristic sarcoid inflammation makes us all look pretty much the same under a microscope. Every case involves non-caseating or non-nectrotic (big words meaning 'healthy') granulomas. Sarcoidosis is a systemic disease; the same inflammation is affecting different areas of the body. Inflammation and granulomas are what we should think of with any new or recurring symptom.
So the first question should be, "How is this symptom related to inflammation?" Only after inflammation is ruled out would we expect Doctors to explore other possibilities. Why don't we expect our doctors to consider the body as a whole, rather than looking at each body part separately, as if it were not connected to the rest of the body?
Many, many hormones and biochemicals flow through the body to help us adapt and effectively fight the infection. Some go to the brain, telling it to slow us down (fatigue), freeing up extra energy for the inflammation to use in fighting the bugs. Why don't we expect our Doctors to have been taught this?
We need to discuss this with each other, with our family and friends (so they understand the various symptoms are due to inflammation affecting different body parts) and with our health care providers. Do you think this explanation is simple? A lot of truth is very simple. Think about it.
Belinda
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