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 WE\'RE BACK!!!

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Mike
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PostSubject: WE'RE BACK!!!   Tue 23 Oct 2007 - 21:05

We're back online!!

Great news - Sue, from the UK charity, has asked to incorporate this forum into their brand new website!!!

THE SITE IS NOW OPEN FOR BRAND NEW MEMBERSHIPS!!!

WELCOME BACK EVERYONE!!!!

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scottgallacher

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Location : Leicester
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Registration date : 2006-03-10

PostSubject: Re: WE\'RE BACK!!!   Tue 23 Oct 2007 - 21:11

Thats great news mike.

Whilst we did not post a lot previously, I did check this forum regularly and think it is a very valuable service.

Regards

Scott
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Tue 23 Oct 2007 - 21:14

It's great news!!

how are things anyway mate??

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mavs_fan

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Registration date : 2007-10-23

PostSubject: Re: WE\'RE BACK!!!   Tue 23 Oct 2007 - 23:14

Cool, I signed up a while ago and finally got added. I am a 16 year old guy with HED, and I live in Texas (where the heat causes quite a problem). Nice to meet you all, hopefully this forum will become more active since it has started up again.
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sarahcrosby2

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Registration date : 2006-07-22

PostSubject: Re: WE\'RE BACK!!!   Wed 24 Oct 2007 - 11:46

Mike wrote:
We're back online!!

Great news - Sue, from the UK charity, has asked to incorporate this forum into their brand new website!!!

THE SITE IS NOW OPEN FOR BRAND NEW MEMBERSHIPS!!!

WELCOME BACK EVERYONE!!!!

Glad you are all still there!
How easy is it to get a membership and can it be done online?
have to admit I'm not a big fan of the website - tend to use the NFED one more as its easier and more upbeat -.
Still I did my bit for genetic research monday by giving a skin biopsy at Guy's - part of ongoing research into the P63 gene that makes us go wonky!
No have hole in under arm and 4 stiches but feel good that I'm guinea pigged myself again in the name of ED research!!!
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Wed 24 Oct 2007 - 20:10

I'll follow up with website details as soon as I hear from Sue. But I'm pressuming the reason they have made a new site is to make it more accessible, user friendly and informative!!!

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michelle

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PostSubject: Re: WE\'RE BACK!!!   Wed 31 Oct 2007 - 17:49

Just joined as new member.I have a son aged 5 with HED looking forward to talking to other members.
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scottgallacher

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Number of posts : 21
Location : Leicester
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Registration date : 2006-03-10

PostSubject: Welcome   Wed 31 Oct 2007 - 18:29

Hi Michelle,

Welcome, we have two boys Ryan aged nearly 4 and Daniel aged 2.

Ryan definitely has HED and we are almost certain Daniel has it as well.

Ryan has most the key symptons, whereas Daniel has good skin, doesn't appear to overheat but has no teeth yet.

We live in Leicestershire.

Regards

Scott & Eileen
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Wed 31 Oct 2007 - 22:30

Hey Michelle! Nice to have you here!!!

howde-doody Scott! What have you been up to? You're boys still keeping well???

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Mike
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PostSubject: Re: WE\'RE BACK!!!   Wed 31 Oct 2007 - 22:32

mavs_fan wrote:
Cool, I signed up a while ago and finally got added. I am a 16 year old guy with HED, and I live in Texas (where the heat causes quite a problem). Nice to meet you all, hopefully this forum will become more active since it has started up again.

hey fella! Great to have you here!!!

Yeah, I can imagine that Texas would be quite a warm place!

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burden



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Registration date : 2006-04-26

PostSubject: Re: WE\'RE BACK!!!   Thu 1 Nov 2007 - 0:45

I've guinea pigged too! Had 4 stitches out yesterday, apparently I have a wonky P63 gene ina completely new place. Being called a new mutation is not quite how I envisaged my 15 minutes of fame, but feels good to do something!
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edadmin



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PostSubject: Re: WE\'RE BACK!!!   Thu 10 Jan 2008 - 15:08

Hi Mike it's Sue from the office, could you have a look at the links from this site back to the new website www.ectodermaldysplasiasociety.org as I tried earlier and it didn't take me anywhere!
Glad to see the site is creating new interest,hopefullt with the new website it will create even more
Sue Surprised
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Diana

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PostSubject: Here at last   Thu 10 Jan 2008 - 15:34

Hi here I am at last Smile

I have noticed a lot of questions which I will try to answer soon, but please give me a coupld of weeks as I am busy getting the January newsletter together.

I will be putting an article in the newsletter about the Forum so hopefully there will be a lot more people on line soon.

Bye for now - I will be back

Diana
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Thu 10 Jan 2008 - 16:21

Diana, I can't seem to locate the website by typing in www.ectodermaldysplasiasociety.org

Is the site running ok? Also, when I click the link left by Sue it goes nowhere either.

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Diana

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PostSubject: Website address   Fri 11 Jan 2008 - 2:18

The website address is just www.ectodermaldysplasia.org there is no society in the address.
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Fri 11 Jan 2008 - 19:30

I thought that! But, the link Sue put up a few messages before this, had society in it!!! Very strange!

Anyway. the logo is up and the link is active! cheers

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Ben and Renee

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PostSubject: Re: WE\'RE BACK!!!   Fri 10 Oct 2008 - 14:09

Hello to all,

My name is Renee, I am in Melbourne Australia and I have two beautiful boys. Hayden is 2 (just) and has HED and Hunter 10 months who (as far as we can see) does not have ED. I have only just come across this forum but I am so excited about the prospect of having like minded people to talk to, and having questions answered by others who have actually experienced these things themselves and not doctors who just play guessing games.

Looking forward to getting to know everyone.

Cheers,
Renee
Very Happy
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michelle

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PostSubject: Re: WE\'RE BACK!!!   Fri 10 Oct 2008 - 18:57

Hello Renee,

Welcome to this site. you will see it's not as well as used as we would like. Please don't let that put you off I'm always happy to see new people on the site.
I have 1 son, Wesley, who is 6yrs, who has HED.
Does Hayden have a problem with controlling his temperature, how do you cope with that in your warmer climate.
Its' always great to make new friends, wherever they are.
Looking forward to hearing more from you.

Michelle x Very Happy
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Mike
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PostSubject: Re: WE\'RE BACK!!!   Tue 14 Oct 2008 - 19:04

Ben and Renee wrote:
Hello to all,

My name is Renee, I am in Melbourne Australia and I have two beautiful boys. Hayden is 2 (just) and has HED and Hunter 10 months who (as far as we can see) does not have ED. I have only just come across this forum but I am so excited about the prospect of having like minded people to talk to, and having questions answered by others who have actually experienced these things themselves and not doctors who just play guessing games.

Looking forward to getting to know everyone.

Cheers,
Renee
Very Happy

Hello, and welcome!
We're beginning to see member join from all over the world which is excellent news!! You'll find yourself at home here in no time!

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Ben and Renee

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PostSubject: Re: WE\'RE BACK!!!   Wed 15 Oct 2008 - 5:53

Hello Michelle,

Thank you for the warm welcome. Hayden does have trouble controlling his temperature as he has no sweat function at all. At the moment it's easy to help him with this as we just stay home in the air conditioned house on really hot days (35 degrees celcius) and higher. When he gets to school age it may get more difficult but we'll have to see how he handles it. He also cools down really quickly when we wet his t-shirt and put it back on him. But for the milder days we find a water spray bottle does the trick.

Our biggest problem so far with Hayden is dealing with his really dry nose. It irritates him so much. We have a vaporiser running all night and use the saline and sesame oil when it gets really bad but he hates it. He has to be pinned down to do it and he gets himself so worked up.

Well thanks again for the warm welcome.
Hope to speak to you again soon.
Cheers,
Renee


Last edited by Ben and Renee on Fri 7 Nov 2008 - 7:52; edited 1 time in total
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michelle

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PostSubject: Re: WE\'RE BACK!!!   Wed 15 Oct 2008 - 14:27

Hello Renee,

I think it has got to be a bit easier for us over here, I think I must be the only person who is glad we have not had a hot summer again. When it is hot I also wet Wesley,s T-shirt, he likes his cap to be soaked with water and put back on his head. His cousin who does not have ED also found he liked this as a way of cooling off. I found I could buy a water spray, which you fill yourself, from the pound shops, so they are very cheap. This means I have them all over, school, car, grandma's etc and lots of spares.
Wesley also has a very crusty nose which causes nose bleeds, although these seem to get less ever year, hope I haven't jinked that lol!
Wesley also has impacted wax in his ears, this gives him a small degree of hearing loss and is monitered by the hospital.
speak again soon.

Michelle x
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