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 Do I and my daughter have some form of inherited ED?

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Mira



Male
Number of posts : 13
Age : 43
Location : MALTA
Age : 34
Registration date : 2008-08-13

PostSubject: Do I and my daughter have some form of inherited ED?   Wed 13 Aug 2008 - 15:29

Hi guys

this is my first post on this forum. I subscribed for membership to ED last June for my nearly 2 year old daughter Miranda (www.MirandaMifsud.com). Through her, I (her father which my name is Stephen) discovered about ED, and that I also have a form of this condition (I think).

Miranda has many genetics features of me. I am Maltese and my wife (miranda mother) is Finnish. My wife do not have any form of ED.

The first alerting issue was the lack of bottom incisors. I talked with my cousin - a dentists, and he mentioned the condition ED. After reading on the internet more and more about it, I was surprised that I possibly have this conditon, and my daughter may probably inherited something Sad


=====About Myself=====

Scalp Hair:
I had beautiful curly full hair (slightly oily) up to puberty when it started to fall gradually, very fast between 13-19) Now I have rather sparse hair which cannot be described as bold as the hairline is still maintained.

Body Hair
I have below average body hair, with very little to none at the arms, hands and feet. The skin at the feet is very dry. Armpits sparse hair, chest below average, but not sparse.


Teeth:
From birth I had 3 bottom incisors and 2 upper missing. The molars where normal, but I did not developed the set of back 4 'maturity' molars at 20ish.

Sweet
Seems the problem is localised at the same area where I have little hair (feet, arms) but I sweat nearly normally from neck, armpits, fingers, back, etc. Fortunately, i had an active sports life, and was not affected

Nails normel

So I wonder if I have some mild form of EP


=======Mira=======


My daughter seems to be a bit worse. At nearly 2 years she has 2 large upper incisors, and 4 molars, a pair at every jaw. Just now she is developping the 2 upper canines, so hopefully she would not need a denture at the upper jaw. I hope she will get 2 lower canines too (hence more or less like yself)


Her sweat seems normal, and her nails are definitely normal.

She is very blond and compared to other children of her age, I feel she has a bit less, especially at the sides (above the ears). The hair at the of the crown looks rather normal, fairly curly and comb-able, but at the back side, it is very thin, dry and as "stuck togeher" that it cannot be combed. I remember well that I had good healthy hair when young.


She is very cute and people at the street stop to look at her and congratulate her for being so lovely.

I have written all this 'intoduction' text to understand better if we do really suffer from some form of ED. When I read the full ist of symptoms, there were some other symptoms which applied to me in a smaller scale.

I think that my Mum had a more severe form of Ed, from where I have inherited part of it.

Comment - the post writing text box -> red on orange background is quite uncomfortable to write. I would suggest a pale bacjground please.
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Diana

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

PostSubject: Re: Do I and my daughter have some form of inherited ED?   Fri 22 Aug 2008 - 21:53

Hi Stephen,

Have you seen a Geneticist? A Geneticist will be able to give you an accurate diagnosis for both you and Mira.

If you would like to send me a picture of you both I may be able to see if you have the typical characteristics of ED. My email is diana@ectodermaldysplasia.org

I would also like to discuss with you Mira's hair and how you can manage it. My son had very knotted hair, particularly at the back of his head; and still does he is now 13!

Look forward to receiving your email.

Diana
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Mira



Male
Number of posts : 13
Age : 43
Location : MALTA
Age : 34
Registration date : 2008-08-13

PostSubject: Re: Do I and my daughter have some form of inherited ED?   Sat 23 Aug 2008 - 0:07

Dear Diana,

Thanks very much for your time to go through my long post and reply us.

Gentists are not yet popular in Malta (do not know any actually), and I am told that the test migh tbe very expensive and will not really have direct use to improve Miranda's condition.

Well, you can see plenty of photos of my daughter and bit of me too from Mira website:
Use the link below and choose the 1st or 3rd photogallery (2nd not yet avaialble) from the menu:

http://www.mirandamifsud.com/MirandaPhotoAlbums.php

My aunt suggested a conditioner which acyually improves the knotted hair at the back drastically. She said that when she grow older it will be all normal (without telling her about EP)

I can confirm that she does not have the sweat problem, and so my main concerns are:

1) lack of teeth noticably at lower jaw
2) Will her hair fall at puberty (same as me and my mum)
3) I also read that in girls there are problems with late puberty and different breast sizes ?!?!

Thanks
bounce
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Mike
Site Admin
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Male
Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Do I and my daughter have some form of inherited ED?   Tue 14 Oct 2008 - 19:18

Hi there!

I lost my hair at around 18 years old, however I was shaving when I was 13! Very strange!

I only ever had two fang-like teeth at the front top jaw, but since had those removed and have worn dentures since the age of 5 years old.

Your post is very detailed - allow me to go through it properly and try and answer any questions!

_________________
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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Mira



Male
Number of posts : 13
Age : 43
Location : MALTA
Age : 34
Registration date : 2008-08-13

PostSubject: Re: Do I and my daughter have some form of inherited ED?   Thu 16 Oct 2008 - 21:49

Update:

Mira (now 2 years 1 month) have developped 4 large canines so now she has 2 large upper incisors, 4 molars and 4 canines with no incissors at the bottom. It is more or less like me.


Apart the teeth, the hair is the 2nd worst condition. Although she has below average amount of hair, nobody notice anything wrong with her. She has wavy/straight hair at the scalp front half of the head, but at the back it is dry and very curly. I also noticed lack of hair at the sides, that is close to the ears, but it does not show much.
Hair cuts only twice so far.

Sweat, eyes, nails, ears - I would say 99% perfect

Other observations:

She has a small head (Anything to do with ED?)

She is very active, playful and good capability of understanding and doing things, but the speech is a bit behind compared to other children. Any connection with ED?

Here are some photos of my daughter. She looks 'OK', but I would like to know if she has ED so that we are prepared and keep updated. Are there type of EDs which are mild or its an all-or-none situation ?






















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