Ectodermal Dysplasia
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 hi new here, have three great nieces with ed

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clara




Female
Number of posts : 1
Age : 64
Location : kentucky
Age : 49
Registration date : 2009-09-22

hi new here, have three great nieces with ed Empty
PostSubject: hi new here, have three great nieces with ed   hi new here, have three great nieces with ed EmptyTue 22 Sep 2009 - 6:40

Hi all, I have just found out this weekend i have a 2 great nieces and nephew with ed, which i believe has been in the family for years.

There is 11 (9 girls, 2boys)of us children in my family im 59 years old and the youngest of us. I still have my teeth (never had the money to get anything done growing up) as alll my sister and brothers we are all missing teeth, I'm missing 12 I never got my wisdom teeth but im not complaining on that one, lol all are pointed or peged? if that what its called except for my four front teeth
I've never been able to grow nails they break off or split in the middle exspecialy the thumbs. My hair is not effected but is thinning at the forhead line.
One of my sisters had very thin wirey hair never got past mid neck untill her was in her twentis and it started growing its still thin and wirey thou and her three kids all had the thin short hair, her daughter didnt get her first hair cut till she was four years old.
about half of our kids have the sharped pointed teeth and missing teeth,

The next generations is our grandkids we have 3 thats has been diagnoised with ed they have all the cone shaped teeth, sparse hair, skin conditions, Does it have generations were its mild then show up full blown several gererations down?

Now the one questiion i really want to ask, does ED effect the bones of the body or mental retardation? my son is 27, his teeth is mishapened and several peg shaped, he is missing 14 and very crowded. he has learning diabilities, mental retardation, has sunken chest, speach disorders, muscle weekness in the mouth (dysaurthia)facial flatness ( not sure what to call it), ear infections,
Thats enought for now, gotta go to bed, Ill be back on in a day or two and post pictures if i can
thanks for reading
clara
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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

hi new here, have three great nieces with ed Empty
PostSubject: Re: hi new here, have three great nieces with ed   hi new here, have three great nieces with ed EmptyMon 11 Jan 2010 - 22:22

Hi Clara.

ED affects the Ectoderm (teeth, hair, skin, nails) and teeth are not technically classed as part of the bone structure.

I'm unaware of any effects ED can have in terms of mental progression so hopefully someone can help us out with this?

Welcome, albeit late! king
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