Ectodermal Dysplasia
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Ectodermal Dysplasia :: The Condition Itself :: YOUR Story
 

 EEC

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3 posters
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carla mcinroy




Number of posts : 2
Location : perth scotland
Age : 32 daughter 4 1/2
Registration date : 2006-05-20

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PostSubject: EEC   EEC EmptySat 20 May 2006 - 22:27
My daughter was diagnosed at 3 weeks old with eec, no family history other than an great aunt and grandad with webbing on there toes. She was also found to have bilateral coanal atresia. This lead to her having a trachostomy being carried out a 2 months old after 2 failed attempts to open up her nasel passage and enable her to breath easier. Has anyboby else found this problem? Between that and the hand and foot surgery she has just completed her 17th operation. How has anybody else tackled the questions from a 4 1/2 year old about why is her hand and foot different from everybody else? If there are any other members from scotland we would be interested in hearing from you as we are trying to find others to perhaps meet or keep incontact with how has experience of local hospitals as to correct her nasel problems we have spent the past year travelling to GOSH every 6-8 weeks
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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: EEC   EEC EmptySun 21 May 2006 - 15:56
Hi Carla, and welcome to ED Forums. Firstly, I ask you to be patient with the forum. It is only just gaining public interest, we'll get there soon!

Was nice to read your story, in terms of members in Scotland I'm not too sure if there are any on the forum just yet. I can't really answer your question about talking to a child so young about it but I think everyone deals with it differently.

Sorry I can't be of much help!

Again, welcome. You'll enjoy it here cheers
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sarahcrosby2

sarahcrosby2


Female
Number of posts : 49
Age : 56
Location : watford
Age : 38
Registration date : 2006-07-22

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PostSubject: Re: EEC   EEC EmptyTue 22 Aug 2006 - 14:54
hello there!
I have EEC - with hands and feet affected, cleft palate, heir lip, small bladder, missing teeth, corneal ulcers,etc etc BUT I have married, have 3 children and am very happy!
Our middle child has EEC also (although medics question diagnosis it's obvious to me!) She has very short non growing hair, missing teeth, renal problems and 1 fused digit on her hand.She is now 14!
We don't have the other problems that you've mentioned but if we can give you any help or advise please ask!
Sx
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carla mcinroy




Number of posts : 2
Location : perth scotland
Age : 32 daughter 4 1/2
Registration date : 2006-05-20

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PostSubject: Re: EEC   EEC EmptyThu 27 Sep 2007 - 0:23
Sorry its been ages since i logged on hows is everyone? I have just returned from the dental hospital with beth and have now found out she is missing nearly all of her adult teeth and the ones she does have are erroding as well. On a positive not we have managed to find a medication to help thinher secretion. At the moment it is making life better for her. Any way must go just thought i would give you all an update pig
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