Ectodermal Dysplasia
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A Meeting Place For People With ED!
 
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Diana

Diana


Number of posts : 10
Registration date : 2008-01-10

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PostSubject: Can I Join in?   Can I Join in? EmptyMon 2 Jun 2008 - 12:12

Hi Diana Perry here. For those of you who don't know who I am, I am a Trustee of the ED Society - I will occassionally be writing with my 'I have ED and am a parent of 2 children with ED' hat on and other times in my capacity as Family Liaison Officer of the ED Society.

I have been watching the Forum for a long while now and I too am wondering where everyone is. We keep advertising the Forum in the newsletter - any suggestions how we could promote this more? Would any of you like to write an article for our newsletter encouraging people to join?

Reading some of your questions, I may from time to time dip in and help answer them if this is OK.

Diana
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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: Can I Join in?   Can I Join in? EmptyWed 4 Feb 2009 - 17:48

Excellent idea Diana (aolthough this post is a year late) but I have just distributed another mass e-mail of encouragement!!!

How are you?
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http://ectodermaldysplasia.coolbb.net
Kiara1977




Female
Number of posts : 1
Age : 46
Location : Portugal
Age : 33
Registration date : 2010-11-08

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PostSubject: Re: Can I Join in?   Can I Join in? EmptyMon 8 Nov 2010 - 0:50

Hi!!! May I also join in? Very Happy
In the first place, I'm sorry if my english is not correct but I'm from Portugal.

I'm 33 years old and I know I have ED since 11.
Since then, I almost forgot that I had ED. In fact I don't know any other person who has it.

I got married and had a lovely daughter. Now i'm planning to have another child and my dentist came with the ED issue again.
As I previous told you, I knew when I was 11, made lot of medical exams, felt like a guinea pig, but no doctor really explained to me what was ED: I can hardly remember about the kind of ED. I believe they had explained to my parents but they never talked about it. I also believe that by that time (20 years ago) there wasn't many information about it.

Now i'm searching for it, and I don't no what to do about getting pregnant again.

In any case, I'm very happy to find you! You look just like me! Very Happy
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