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Number of posts : 2
Age : 49
Location : Alabama
Age : 39
Registration date : 2008-07-03

PostSubject: Introduction   Thu 3 Jul 2008 - 16:26

I posted a question on the teeth forum and failed to introduce myself here. I have a daughter, Callie, who is six months old and diagnosed with ectrodactyly, ectodermal dysplasia. When she was born she had paper thin skin, a bi-lateral cleft lip and cleft palette and syndactyly toes on both feet. She didnít have the traditional ectrodactyly toes or fingers so the diagnosis bounced between EEC and Hay-Wells until the genetics confirmed the EEC. Her skin has filled in nicely with just a few bad spots here and there and continuing problems with her scalp which is suspected to be due to seborrheic dermatitis. She had her first lip surgery which was to fix the entire cleft lip. However the surgeon was only able to rotate the nostril and didnít complete the surgery because of Callieís soft (at the time) skin. The rest of the surgery will be done at the end of July and the palette two months afterwards.

I thought I would introduce myself and Callie since I may be asking for others for their experiences and of course will be willing to offer my experiences to others.
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Number of posts : 188
Age : 33
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Introduction   Thu 10 Jul 2008 - 16:05

Hi, and welcome to ED Forums!!

Thanks for making the first step. We're very quiet at the moment but do have a number of experts, including the chair of the Nederlands ED society and the UK ED Society on board who, in time, will assist you with your queries!

In the meantime, I hope you enjoy being a part of ED Forums!

We are like crayons. Some are different colours, different shapes, and diferent sizes. But we all must live in the same box
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