Ectodermal Dysplasia
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Rayray




Female
Number of posts : 1
Age : 62
Location : South West England
Age : 47
Registration date : 2009-03-24

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PostSubject: New Member   New Member EmptyTue 24 Mar 2009 - 17:12

Hi there,

I am a new member of the ED Society. I found out about ED a couple of years ago when, following a miserable Christmas with toothache, I visited the dentist who told me my front tooth may need to be extracted. This may not seem a major issue but this tooth was crowned and is part of a bridge due to several of my front upper teeth being missing. I wanted to find out if I could get funding for implants. Anyway my fantastic dentist managed to save the tooth with a root canal through the crown and I still have it.

I am self diagnosed and so may of course not even have the condition. I have several teeth missing (five plus wisdom which I don't think you count), still have a baby tooth, the teeth that came through at the front were missing crowns, were pointy shaped and one gradually died over the course of a few years but was always grey. I had no nails for several years and my finger nails are very thin and ridged and impossible to grow at all. I don't particularly have other problems although I have always struggled eating dry food and when I scratched my cornea several years ago my very dry eyes wouldn't allow it to heal and three years later, despite four hourly ointment, I had to have laser treatment which worked - thank goodness as it was a long time to have a scratch on the cornea!

One thing I am interested in is sweating. I do sweat but it does seem odd to me as I don't seem to sweat at all for ages and then it is profuse almost as if the sweat glands have burst. Until this happens I really struggle in the heat although this may be just due to my very fair skin. Is that ED or not linked at all?

Last year I was diagnosed with problems in my hips, similar in some respects to hip dysplasia but not the same in terms of clinical diagnosis - it is called Femoral Acetabular Impingement which I have in both hips and needs major surgery. ED has taken a back seat although I will pursue a diagnosis at some point as some funding for implants would be good if I start to loose my teeth which have always looked pretty awful despite the bridge!
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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: New Member   New Member EmptyMon 11 May 2009 - 12:46

Hi Rayray!

Thanks for joining us!

You mention a few points which would clearly indicate ED, but I would strongly suggest a visit to your GP or Geneticist, to be diagnosed correctly. ED has a layout of around 150 different symptoms, so I would definitely get it checked out. cheers
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