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~Miscellaneous~ Have an EDS question (or any other health question!) but can't decide where to put it??? You can place it here!

Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 02-03-2008   #1
ReineDeLaSeine14
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Well I'm Back!!!!
Back home in CT...and in a Dysaut flare from the trip *sigh*

The visit was AWESOME!!!! Dr. Francomano is the BEST person to see if you have EDS hands-down.

She noticed a lot of funky things...and said my EDS is atypical...but I do have it...Hypermobility along with Mild Classical.

I also found out I have Chiari Malformation, a Tethered Spinal Cord, and Costochondritis.

I have to have some more tests done, go to the Chiari Institute in New York and begin PT (aquatic and relaxation), learn biofeedback etc and get an Rx for Flexaril because my muscles don't relax AT ALL.

Because Brittany is not well at the moment (dislocating knees) we weren't able to meet...but maybe another time I can go back (or randomly she ends up here).

Ooooh and I went shopping
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Old 02-07-2008   #2
xxBrittany
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Steph, I am so glad that the trip went well for you.
I prayed to God that it would go well.

Oh, and I am so sorry we could not meet up. But I promise you I will meet ya soon girly!
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Old 02-07-2008   #3
ReineDeLaSeine14
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Road Triiiiiiiiip!

not really lol i can't sit in a car...i got really sick on the way back to the airport lol from the stuff they put in the car to make it smell nice...ugh
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Old 02-09-2008   #4
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I'm really glad that it went well for you. I know that from your positive visit I'm very optimistic that Mine will go well too.

Brittany, I hope that you are doing better, and maybe when I'm in Baltimore we can possibly meet up. I know that I would love to be able to meet you.
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Old 02-17-2008   #5
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Staci, can't wait to meet you! Your such a sweetheart and thanks for the get wells!
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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