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Okay Guys, Here Me Out For This One...


ArmyNPots

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Hey guys

I have been doing some thinking and I thought it might be nice to put together a minibooklet/magazine about POTS. Not for educational purposes (we know what we have) but for inspiration purposes. Maybe people can write and let me know a great accomplishment or maybe about overcoming a POTSY moment.

I know I would love to check my mail one day and see a little booklet about POTS and written by people with POTS. So, I thought it might be a good idea to see what everyone else thinks. If you guys think its a good idea, then I can go from there in putting together something just for us. The brochures are WONDERFUL, but it might be nice to have a booklet out there that shows real life struggles/real life accomplishments.

I have many ideas, and I would love to hear your thoughts on this!!

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Was this the sort of thing you meant? http://www.stars.org.uk/documents/25NEWS-1.swf

This is from STars, the Syncope trust in the UK. My own story (taken from POTSplace) is on page 8.

I think it would be really cool to have a collection of people writing their own 'testimony'.

OR whatabout a collection of poetry/short pieces on altered states/being different/boundaries etc?

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I think it's a great Idea-----------I think the public----medical professionals need a little more shock and awe on the realities of this disorder and how it can affects our lives. I still think some educational facets still need to be included, but perhaps in our own experiences----and of course our triumphs----accomplishments despite all this. Our stories about overcoming some of the terrible times that can come with this can inspire other folks who have just discovered they have dysautonomia.

There are different levels of this illness---some very severe, and some more mild, but even the folks with milder ANS dysfunction have to alter their lives in one form or another.

I also think it's a good idea to have a photo on the front cover of a little booklet that shows all the different types of people that get this disease----people of all different shapes and sizes----and all the ethnic groups affected.

There's a certain amount of ignorance out there on the type of person that gets dysautonomia. This would be a opportunity to help eachother overcome the struggles---and at the same time show that even though we all have a lot of the same struggles and symptoms---we are still all different......... :blink:

Let me know if I can be of any help................. :)

Maxine

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