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ehlersdanlossupportclub · Ehlers Danlos Support Club - A place to talk about Ehlers Danlos Syndrome
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Fw: EDS Today Call for Articles Fall 2006   Message List  
Reply | Forward Message #433 of 643 |
Re: [Ehlers Danlos Support Club] Fw: EDS Today Call for Articles Fall 2006

I would encourage you to look into testing for Arnold Chiari Malformation
and Postural Orthostatic Tachycardia Syndrome (POTS). EDS is linked to both
of these.

I used to faint/fall/blackout every time I stood up. Basically, my blood
pressure was low and when I went from resting to active, it wasn't
sufficient to get the blood to my brain and I passed out or got dizzy. This
is POTS. POTS is also referred to as Orthostatic Intolerance (OI).

EDS Today published a reprint of the study on EDS, Orthosatic Intolerance,
and Chronic Fatigue. You can read it online at the link below. Just click
the link here and then click Fall 2000 PDF. It's a large PDF file and may
be a slow download, but I hope you find it useful.

http://www.edstoday.org/newsletter/Issues/Issue2.htm

POTS/Chiari/EDS
http://potsplace.com/Winter_Spring2006/ws06news4.htm

-Barb
Sat Aug 26, 2006 4:32 pm

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Forward 		Message #433 of 643 |
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Hi Everyone, We are already working on the Fall-Winter 2006 issue of EDS Today. The featured topic in the fall will be Accessible Housing. We are seeking ... 		Barbara Davis
uggen_davis
Offline Send Email 		Aug 9, 2006
5:50 pm

Can you please do an article for kids who would like to go to college and can not afford it. My daughter had so many surgeries and complications in her...
Donna Scranton
ltlfvr2
Offline Send Email 		Aug 24, 2006
6:32 am

We did an issue on school accommodations the very first issue. You can read it online at www.edstoday.org. Go to Newsletters, click Past Issues, and select...
Barbara Davis
uggen_davis
Offline Send Email 		Aug 24, 2006
4:43 pm

I have no real expierence in the getting college paid for but I do know being on the low income side that certian places especially in a case like yours you...
angela salisbury
momofthreeha...
Offline Send Email 		Aug 24, 2006
6:52 pm

thank you, but I guess I have looked into everything we can. I know a friend of her has diabetes and he got a full ride to college because of his disability....
Donna Scranton
ltlfvr2
Offline Send Email 		Aug 25, 2006
2:26 am

Hi again, Have you actually tried McDonalds? I am also diabetic. I have had it since I was two years old. My heart goes out to you and your daughter and her...
angela salisbury
momofthreeha...
Offline Send Email 		Aug 25, 2006
3:06 am

RE: Paying for college Try Dept of Vocational Rehab. Also try www.fastweb.com to look up scholarship options. RE: Brain issues ... I just was dx'd with Chiari...
kdavis@...
uggen_davis
Offline Send Email 		Aug 25, 2006
3:31 am

My daughter was having sever headaches and they thought she was having seizures.. they never really told me.. what the final out come was.. I dont think they...
Donna Scranton
ltlfvr2
Offline Send Email 		Aug 25, 2006
3:36 am

Were they seizures or blackouts? I had a lot of blackouts/dizzy spells. 20 years later, it was dx'd as Chiari 0 or tonsillar ectopia. -Barb...
kdavis@...
uggen_davis
Offline Send Email 		Aug 25, 2006
3:43 am

they never said, my daughter just said she would betanding talking to friends and then she would fall and 9 times out of ten she would break a bone. Now she...
Donna Scranton
ltlfvr2
Offline Send Email 		Aug 26, 2006
4:35 am

Thank you for trying to help. all three of my kids trip ALL the time but I have always thought it was due to bad vision. :-) My oldest daughter has horrible...
angela salisbury
momofthreeha...
Offline Send Email 		Aug 25, 2006
2:53 pm

I would encourage you to look into testing for Arnold Chiari Malformation and Postural Orthostatic Tachycardia Syndrome (POTS). EDS is linked to both of...
Barbara & Kerry Davis
uggen_davis
Offline Send Email 		Aug 26, 2006
4:38 pm

Donna, ... I sent your request to the board of EDS Today. Bonnie Heintskill wrote an excellent article on this topic for the current issue which will mail out...
Barbara Davis
uggen_davis
Offline Send Email 		Aug 30, 2006
12:21 am

Hi guys! I could use some guidance. My daughter (6) was diagnosed with HEDS last December. The OT's were already working with her weekly at school, which they...
Amy Fleeman
bugnlogan
Offline Send Email 		Aug 30, 2006
1:25 am

I feel like a pro when it comes to special ed. I have two children in it as of now. My son has been in special ed since he was 6 months old and could not...
angela salisbury
momofthreeha...
Offline Send Email 		Aug 30, 2006
2:51 am

Hi Angie! ... Oh no, she wouldn't go for the whole day, just a little here and there. There is no way she belongs in a special ed class. ;) ... start until...
Amy Fleeman
bugnlogan
Offline Send Email 		Aug 30, 2006
3:03 am

Hey Amy, I'm Julia and i'm 17 and currently a sewnior in High School. i was diagonsed with EDS type 3 two years ago. I really understand what your daughter...
hobbleon4ever
Offline Send Email 		Sep 5, 2006
12:37 am
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