Ectodermal Dysplasia
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A Meeting Place For People With ED!
 
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5 posters
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: How did you find us?   How did you find us? EmptyThu 27 Apr 2006 - 17:12

I think its absolutely brilliant that we have 7 registered members to the site before it has even received any publicity.
So, if you like, tell us here how you came across ED Forums!! Very Happy
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: Re: How did you find us?   How did you find us? EmptyMon 29 May 2006 - 18:26

OK, I'll start.

I made it Laughing
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scottgallacher

scottgallacher


Number of posts : 21
Location : Leicester
Age : 32
Registration date : 2006-03-10

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PostSubject: ED Society website   How did you find us? EmptyTue 30 May 2006 - 22:42

Mike wrote:
OK, I'll start.

I made it Laughing

Hi Mike, I found the ED forum via the link on the members area on the ED society website.
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: Re: How did you find us?   How did you find us? EmptyWed 31 May 2006 - 14:35

Brilliant!!!

Won't be long now, this place will be nice and busy Cool

I notice that you visit the site often!

Hope you are keeping well!
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Lisa

Lisa


Female
Number of posts : 36
Age : 45
Location : Warwickshire, UK
Age : 31
Registration date : 2006-07-22

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PostSubject: Re: How did you find us?   How did you find us? EmptySat 22 Jul 2006 - 2:48

Hi

I followed the link on the ED July newsletter!

I have 2 boys, Garin 8 who doesn't have the condition and Ben 5 who does.

He was diagnosed a few years ago and then of course I was!
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: Re: How did you find us?   How did you find us? EmptySat 22 Jul 2006 - 15:55

Welcome Lisa!

If you don't mind me asking, how old are you? another one of our members was only diagnosed when she took her child to the hospital! This seems quite common!? Question
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Lisa

Lisa


Female
Number of posts : 36
Age : 45
Location : Warwickshire, UK
Age : 31
Registration date : 2006-07-22

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PostSubject: Re: How did you find us?   How did you find us? EmptySat 22 Jul 2006 - 18:09

Hi Mike and thank you,

I am 27 so yes I probably would of gone undiagnosed if my son hadn't.

I have fine curly hair, a lack off teeth, no tears and a few other symptons but was only ever told I had Hyperdontia. Ben has a total of 6 teeth of which only 2 have an adult set ( confirmed by an x-ray ) very fine hair etc. He amazes me as he is so confident within himself and in his first year at school has done so well! He does make me proud! cheers

When Ben was seen at Birmingham Dental Hospital he was also refered to a Dermatolagist but was told by the Dentist that he probably had ED. It wasn't to much of a shock as I had done alot of reserch as I knew there must be a condition to fit our symptoms but was still upset as I guess most people are when you here it confirmed! Sad

We have since been seen at a Genetics Unit but I am waiting to hear on the results as to which of the ED's it is. They thought it strange as I had some symptons Ben didn't and vice versa. I will keep you posted on that.

Smile
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: Re: How did you find us?   How did you find us? EmptyMon 24 Jul 2006 - 14:14

So, do they still say you have hyperdontia, or has that been 'replaced' by the ED??
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Natalie




Female
Number of posts : 5
Age : 37
Location : Rotterdam, the netherlands
Age : 21
Registration date : 2006-12-22

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PostSubject: hey   How did you find us? EmptySat 23 Dec 2006 - 1:04

Hey, i saw your website when i was searching for websites about ED at google Very Happy
i'm new here so hi!!
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http://www.myspace.com/naatjuh
Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

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PostSubject: Re: How did you find us?   How did you find us? EmptyFri 29 Dec 2006 - 16:22

Welcome Natalie! Happy christmas!!

Enjoy yourself!
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alibutler




Female
Number of posts : 1
Age : 51
Location : Hadleigh, Suffolk
Age : 35
Registration date : 2008-05-22

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PostSubject: Hello all   How did you find us? EmptyThu 22 May 2008 - 20:41

Hi, I am new on this site!

My daughter, Lucy (2), has a mild ED. It hasn't been formally diagnosed as they feel it is too mild. However, she only has 6 teeth which most of are pegged and has monilethrix in her hair.

We are not sure if she has a temperature regulation problem as she does sweat through her feet but a couple of weeks ago when it was hot, she had a temp of 39C and was very listless and dry as a bone! Managed to cool her down with a bath. Seeing a the paeditric doctor next month so will mention that!

THought I would join EDS so that I could learn more about the syndrome and maybe meet people with ED in my area.


Alison
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Mike
Site Admin
Mike


Male
Number of posts : 188
Age : 38
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

How did you find us? Empty
PostSubject: Re: How did you find us?   How did you find us? EmptyWed 28 May 2008 - 21:12

It isn't uncommon for people with ED to sweat in small areas of their body. One woman was known not to sweat all her life, until she gave birth - she now sweats normally!

Welcome to EDF!
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