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 New EDS website

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Mike
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Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: New EDS website   Wed 16 Jan 2008 - 2:02

Diana,
The pictures on your main screen - Who are they of Question

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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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Diana

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Registration date : 2008-01-10

PostSubject: Re: New EDS website   Wed 30 Jan 2008 - 16:37

I am not able to give out names - if you want contact with any of them or their parents I can put you in touch. Diana
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Julie



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Registration date : 2007-10-23

PostSubject: Re: New EDS website   Sat 7 Jun 2008 - 23:12

I've been trying to find the information sheet "What is Ectodermal Dysplasia" on the new website. It used to be a 2 page item on the old website and was the stuff we printed off to give out to doctors, friends, etc as it was very good and covered all the topics under little headings like sweat function, skin, hair, etc.
Is this still on the new website anywhere? Can anyone tell me where as we need to print some more copies?
Thanks
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Diana

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PostSubject: Re: New EDS website   Tue 10 Jun 2008 - 13:44

Hi Julie,
The section on the website called "What is ED" is exactly the same as the leaflet we used to use. However, you have made a good point in that people will still want to print off copies to hand out, so I have asked Sue to upload a copy of "What is ED" onto the members section of the website under directories.

Hope you are all well.

Diana
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Julie



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Number of posts : 21
Age : 44
Location : Scotland
Age : 38
Registration date : 2007-10-23

PostSubject: Re: New EDS website   Tue 10 Jun 2008 - 18:50

Thanks Diana, I read the first page - what is ED - but then the next pages were FAQ and types which weren't what I was looking for, so I never read as far as the final page of symptoms which is what I was looking for...
A PDF would be a good idea. Thanks.
We are all well thanks. Daniel got his new teeth on Friday. They are significantly bigger so he's back to taking them out to eat. The teeth themselves are larger to take into account his age now, and they are much deeper on the bottom set. He says they ache when he first puts them in and he's tried eating but just can't manage it. It'll just take time I suppose, like with his others. He's got another operation on his eyes coming up the week after next. There's always something. But the deal is if he has an operation he gets a present so he's happy enough!
Your boys will be very grown up by now. Hope you're all keeping well
Julie
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Diana

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PostSubject: Re: New EDS website   Tue 10 Jun 2008 - 21:15

Hi, Danie'ls facial muscles will soon get used to the new size; as you say it is just like having dentures for the first time. Joe had news ones a few weeks ago and it took him a couple of week to get used to wearing them and especially eating with them! The twins are 17 now and both learning to drive. Jack is 13! How times flies.

I hope all goes well with Daniel's operation, please let me know how he gets on.

Diana
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