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Re: How do we get sarc??

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, in regards to how kids get this-- the research is as absent in pediatric sarc as it is in adults. Sarcoidosis is not something you catch, or get like a virus or infection.

They don't know yet what starts it, how we develop it-- although genetics is playing a bigger role all the time in research studies-- but only to the extent that there is a genetic precursor to autoimmune disease-- so it could have been that diabetes, arthritis, MS, lupus, or any one of the multitude of AI diseases is in the family gene pool.

What they are looking at is that we probably ended up with some infection that turned the immune system on, and we are not able to produce the right combination of clearing blood cells to (TNF-a and TNF-B) to shut down once the trigger came in.

The other component that was common in the ACCESS study is that we seem to have a greater exposure to pesticides, agricultural dust, and we- or someone in the family, has more contact with medical world, that is alot of health care workers, EMT's, nurses, etc, school teachers and such-- so that the viruses we come into contact with are higher than the general public.

Sadly, they still don't know. So all they can do is treat us with anti-inflammatories and keep the systemic inflammation down so we can function-- somewhat.

I wouldn't surprise me one bit that the majority of us have had sarc for a lifetime. I know that I had constant respiratory infections as a kid, my thyroid was so overactive that it had to be removed at the age of 18, and it started acting up when I was 12. They removed a thyroid that was the size of a small grapefruit. My family history is one of chronic illness, diabetes, arthritis and such. I know have a cousin that has MS-- and she is just 41. She was dx 3 yrs ago, and so far, it's not giving her alot of problems.

Take care,


NS Co-owner/moderator

pain question

My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last night just for that.He says, "when did I burn my arm?" There is no discoloration. Does this sound like sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin pain. Thanks for any answers,

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