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 My Daughter has been diagnosed with ED

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bradders

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Registration date : 2008-06-12

PostSubject: My Daughter has been diagnosed with ED   Fri 13 Jun 2008 - 0:14

Hello everyone.

Just wanted to say hi and let you know about our case.

Our family are quite new to all of this and I have found this website in the hope that we will be able to learn more about ED. My daughter is 4 and has never had a hair cut. this is what started my wife and I looking into what the issue might be. after several visits to the doctor our daughter was diagnosed with ED. When our daughter was born she had the smallest slivers of toe nails and the midwife was concerned but we were told by the doctor that they would grow eventually.
Gradually they did start to appear so we though nothing more of it. it was only when the hair did not appear that we realised something was wrong. We have an older daughter who had pig tails by the time she was 4 but Lucy-Jo turned 4 without a haircut and little hair at all. we have seen a dermatologist consultant who confirmed ED and are waiting to see the geneticist shortly.

Our daughter is beautiful and we are very proud of her she is very strong minded and confident so we are sure that she will overcome the challenges in her life, it is me and her mum that are struggling to cope with it all.

reading websites about ED has caused us many tears and concerns for the future. Will she have more hair? will she have teeth when the milk teeth go? will she have issues with heat? these are questions that we will not be able to answer until they happen, but for now we are just enjoying our little beautiful girl being a little beautiful girl.

Any advice that you could give us would be gratefully received.
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michelle

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PostSubject: Re: My Daughter has been diagnosed with ED   Fri 13 Jun 2008 - 13:32

Hi,

Welcome to the forum. We have a son aged 6yrs. He does not have much hair although I think it is easier for boys, even though it can be unruly at times. It does now grow slowly but does not get any thicker. When putting suncream on him we also spray his
scalp.

Our son was diagnosed at 1yrs and when we researched ED we were worried about his future and how we/he would cope. He takes it all in his stride and keeps on surprising us how well he copes.

If we can help you in anyway or you just want to contact someone who knows what you are going through, please don't hesitate to contact us. Very Happy
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Mike
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PostSubject: Re: My Daughter has been diagnosed with ED   Sat 14 Jun 2008 - 15:10

Well said Michelle. Welcome bradders!

It usually is the case that it affects females a little more than the male, but this doesn't mean that your little girl won't lead a healthy and normal life! I have ED, I don't sweat in the heat, and become very aggitated and frustrated. Urination (Sorry) is the only way I can release heat from my body.

I've worn dentures since I was five because I only ever had two teeth at the front. They grew into adult teeth too, but got them removed to accomodate my dentures more efficiently. I've come to see this as the norm because I've never known life with a full mouth of teeth, so it's not as if I've 'lost' my teeth. Your daughter will be the same if it gets to the point that she needs dentures.

I lost my hair when I was 18, but as a kid always had a full head of hair, but it wasn't particularly thick and hard to style/manage.

It's great that you've taken the first step and joined us on the forum. I hope you stick around and become a part of our society. Don't be afraid to ask anything!

Take care.

_________________
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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bradders

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PostSubject: Re: My Daughter has been diagnosed with ED   Mon 16 Jun 2008 - 13:54

Thank you both for your welcome! As is mentioned in my first post, we are worried for the future as we do not know what it holds. Lucy-Jo currently has a full set of milk teeth and has had no dental problems at all so far. I don’t know if this is a good sign for the next set of teeth or not. Hair is growing but very slowly and is very thin and fine. I think for us at the moment it is just the fear of the unexpected. My wife and I have been blessed with Lucy-Jo as she is a delightful child full of confidence and attitude and we are just so worried about her being bullied or victimised when she gets older. At the moment she looks like any other child although she has little hair. As things change in the future I am sure it will become more apparent that something is different with Lucy-Jo and we are dreading it.

The fear of the unknown is getting us down….
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Julie



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PostSubject: Re: My Daughter has been diagnosed with ED   Tue 17 Jun 2008 - 21:41

Hi
We have a son aged 7 who has ED. We also found out when he was 1. He has inherited it from me - so as a female I had ED without knowing until I was 29! My hair is very fine and not thick. I still have quite a few of my baby teeth and had some capped when I was a child as they were peg shaped. Other than that, it's only from knowing about ED as our son has it that I realise this may also be the reason I can have sinus problems sometimes and my skin can be dry. The geneticist who tested my son and I also says I sweat unevenly and my optician says I have low quality tears(!).
My mother also carried ED and passed it onto us. She is 64 now and obviously only found out 6 years ago when I told her so it didn't affect her much!
I know it was a shock for us when we first found out and it is an automatic reaction of a parent to want to protect their child and keep them safe. Daniel is about to finish primary 2 - when he started school we were again very worried but the school have been fantastic and he just copes with everything he comes up against.
As you learn more about ED and ask as many questions as you need then I'm sure you will be less wary. We have good relationships with everyone who treats Daniel and trust them completely to do whatever they can to help him.
If you want to know anything more just ask.
There is also excellent information available from the NFED who are in America. They have members all over the world and can send you great information booklets with lots of photos.
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bradders

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PostSubject: Re: My Daughter has been diagnosed with ED   Tue 24 Jun 2008 - 16:41

sorry for the delay in reply. Thanks you all very much for your words. It means alot to us. I am sure I will be posting on here again soon. Cant really talk now I am at work !

thanks everyone

Bradders
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