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gnomegarden

Pots Epidemic

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I just thought I'd put this out there for comment:

My daughter is enrolled in the home and hospital schooling program whilst suffering POTS. I just called in because it is time for the big standardized test and the woman on the phone said that in her many years there, she had never even heard of POTS, and suddenly they have so many kids with it in the database there.

We have only been in this grim dance since November, I know that I had never heard of it... Is it the case that awareness is just so lacking? is there an increase in cases? or has POTS been around to this extent all along? I of course am referring to all cases and not just kids. :).

Why is it not more studied in the medical world with so many folks suffering, and how do we get more docs to get on the case and be more interested?

Wishing wellness for you all this morning. Xo

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I was just having this conversation with someone here in my town who was asking me about dysautonomia and POTS. She asked "well is it rare?" and I replied "I dont see how it can be that rare when I have found out 4 other people in my town have it!" I am seriously wondering about this now! Crazy stuff for sure!

KC

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I don't know what the criteria are for a "rare disease" but not sure POTS is? It is estimated to affect at least 500,000 as I recall reading somewhere. My doc says probably more, just that so many are mildly enough affected and dr's not aware enough to diagnose properly.

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I think that a big part of the problem historically has probably been mis and underdiagnosis, most likely due, at least in part, to the fact that many more women than men are affected.

However, I have heard other people comment on the fact that it seems increasingly common - because it is still so under-recognized by the medical community it would be impossible to tell. Are more people getting it or are more being picked up and referred? Or both?

One theory from the EDS world is that people who would normally have gotten into trouble in old age are now for some reason getting POTS in their 30s/40s for my generation, and now our children seem to be getting into trouble even younger. I don't know enough to evaluate this, but would be interested to hear others' opinions.

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I think I remember reading (or maybe hearing on a webinar?) that they think 1 out of 100 teens have it- either as a result of mono or other viral infection. Somewhere I read that they think that some kids may kind of "outgrow" their autonomic nervous system for awhile since they frequently seem to get sick around the time of puberty when they get a big growth spurt. They said they think that's why a lot of kids grow out of it as their autonomic nervous system catches up with their bodies. Just another thought to throw out there.....

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I noticed on that list of Rare Diseases that "Dysautonomia like disorder" is listed. What do they consider dysauto like? Interesting!

THAT....right there (that I bolded and underlined). THAT is the reason that this disorder is so under-recognized, as well as what Sarah added. There are so many different names for what we are all going through. But like I posted in another thread, my personal belief is that we all have Dysautonomia but each person has a different subset of diagnoses under the Mother Umbrella of Dys. For example, mine include: IBS, GERD, CFS, POTS, & Fibromyalgia. But each of these disorders is a component of Dys.

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I guess that if you subscribe to the theory that dysautonomia is commonly (but not always) due the post-viral or bacterial infection, post-stressful event, long term post exposure to chemicals and foods like sugar, wheat/gluten, corn/HFCS, milk and aspartame, then one can see that these events are on the rise and how dysautonomia is on the rise.

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