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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Welcome to ED Forums!   Fri 9 Dec 2005 - 21:13

If you have just signed up, then welcome! This forum was created on the 9th of December, 2005. It may be a little quiet now but hopefully it will pick up as more people hear about ED Forums!
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king_andrea1

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Number of posts : 4
Location : West Virginia, USA
Age : 26
Registration date : 2006-01-21

PostSubject: Re: Welcome to ED Forums!   Sat 21 Jan 2006 - 5:39

My name is Andrea. I have an 18mth old son who has Ed. I also have a 24yr old brother with ED. I really think this site is nice.
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Sun 5 Feb 2006 - 16:39

Hi! How did you find out about this website, may I ask??

It's just up and runnin so we are expecting a flux of memberships to arrive very soon! Thanks for joining!!

Speak in more detail soon!
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scottgallacher

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Number of posts : 21
Location : Leicester
Age : 32
Registration date : 2006-03-10

PostSubject: New Member   Fri 10 Mar 2006 - 0:56

Hi, We have two little boys, Ryan aged 2 with X-HED and Daniel aged 4 months who does not appear to have this.

Found the website originally having done a google search for genetic conditions affecting hair and teeth. Actually found out about X-HED a couple of days before our first appointment with a Clinical Geneticist who confirmed this.
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Sun 12 Mar 2006 - 16:01

Great! Welcome! It may seem a little quiet here at the moment but the information regarding the site wil be published in the April version of the ED Newsletter.

Stick around!

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XXXinuyashaXXX

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Number of posts : 11
Location : gone*zoom*
Age : 16
Registration date : 2006-03-28

PostSubject: Re: Welcome to ED Forums!   Tue 28 Mar 2006 - 3:31

umm..how come in your profile picture you have teeth, Question or are they fake?
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Thu 30 Mar 2006 - 14:24

Correct! I have a full set of dentures. rabbit

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king_andrea1

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Number of posts : 4
Location : West Virginia, USA
Age : 26
Registration date : 2006-01-21

PostSubject: Re: Welcome to ED Forums!   Sat 1 Apr 2006 - 1:03

Hey Mke! Good to see ya again. Sorry It's been so long. Ill keep in touch! Andrea
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Thu 27 Apr 2006 - 17:23

No problem Andrea!!! See you soon!

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Goonthe

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Number of posts : 2
Age : 51
Location : Corringham, Essex
Age : 40
Registration date : 2006-07-23

PostSubject: New Member   Sun 23 Jul 2006 - 22:04

Hi All

Ive just signed up, used the link from this months newsletter.

Looking forward to this site developing and being able to talk to other people affected by ED.

My youngest son was diagnosed when he was 15 months old, he is now 3 1/2 and at the moment coping amazingly well with this hot weather.

My eldest son is not affected, he is 8.
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Mike
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Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Mon 24 Jul 2006 - 14:17

Hi Goonthe, thanks for joining us!!

Tell me a little more about your son Question

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Goonthe

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Age : 51
Location : Corringham, Essex
Age : 40
Registration date : 2006-07-23

PostSubject: Re: Welcome to ED Forums!   Tue 25 Jul 2006 - 21:39

Hi, my son Max is nearly three and a half. He has x linked ED and was diagnosed at 15 months when we started to worry that he had no teeth!! He still has no teeth at all, cant sweat properly and has very thin white hair (not a lot of it either!). He suffers quite badly with eczema and gets lots of puss spots on his fingers. Apart from all that he is a normal little boy, full of mischief, very stubborn and has bags of attitude!!
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Heila Butters

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Number of posts : 10
Age : 47
Location : Bloemfontein, South Africa
Age : 37
Registration date : 2006-11-20

PostSubject: Where to start?   Tue 28 Nov 2006 - 12:24

My son, Sean, has been through hell and back since before he was born. He was born on 21 September 2004 by emergency caesarian due to a lack of oxygen and no fluids left in the womb.
At 1 months he got nappy rash which developed into an ulcer. A biopsy was done, but that came back non-conclusive. 15 December 2004, Blood test results revealed high IgM for the cytomegalo virus (cmv). (The paediatircian was not very helpful with giving us any information). On January 2005 he was admitted to neo-natal ICU with double pneumonia. He was there until 13 March 2005, during which we nearly lost him afew times, and he developed an absess due to neglegence when an drip was removed and not cleaned thouroughly. He was subjected to thousands of tests and received a truck load of antibiotics (one of which was gan-cyclovir). Just before being discharged from hospital he was placed in isolation as it was suspected he was immuno-compromised. A scan was done due to the 100% oxygen given during treatment. Fortunately there was no damage noted in the brain, however there was no thymus gland noted! We got referred to a doctor in Capetown and it has been confirmed that Sean has a neutrofil dysfunction. Since then he has been in and out of hospital with bronchitus or pneumonia, and during June 2005 another scan was done and his thymus gland was back!! Various specialist have also had a look at him and at one stage a geneticist who made a preliminary diagnosis of X-linked ED. (He has missing teeth and unknown to us, he had tuberculosis (TB), which also caused him to sweat alot). We don't know of anyone in our family who has ED (and we do have an extensive family) There are apparently no facilities to do the DNA testing here in South Africa, but we have frozen DNA and are waiting for an oppotunity to get it to the right lab.
We don't know which ED Sean has and if any of his other symtoms are in any way related to the ED.
My husband is British, I am South African with UK ancestory and only moved back to SA in 2003, shortly after my daughter was born (she may be a carrier). If there are facilities in the UK that could be more helpful we will move back in the wink of an eye.
This is quite a mouthful and I would really appreciate any input. Heila geek


Last edited by on Tue 5 Dec 2006 - 12:33; edited 1 time in total
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Mike
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Number of posts : 188
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Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Fri 1 Dec 2006 - 17:50

HI Heila. I would strongly reccommend you send a 'Private Message' to Diana (Perryd) and mention this, Find her in the member list and PM her!!!

Welcome!

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mavs_fan

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Number of posts : 3
Age : 26
Location : Dallas, Texas
Age : 18
Registration date : 2007-10-23

PostSubject: Re: Welcome to ED Forums!   Tue 23 Oct 2007 - 23:22

Hey, I just signed up and I am glad there are forums like these out there on the web. I am a 16 year old guy who lives in Texas. I was diagnosed with HED but have managed to keep a positive outlook on life despite setbacks. I love to play basketball (I've played for 9 years Basketball ) and recently got involved into theatre and have done a few shows at my high school. I have a lot of good friends at school and none of them care about my condition. Probably the hardest part of ED for me has been the inability to sweat or the little hair/teeth. It's really hard to watch my friends go out and play football when I have to sit in the shade and drink, but that's why I play basketball, which I don't overheat as easily playing. I used to wear a hat to school because I was embarrassed about my condition, but decided to throw away the hat and just be normal.
Anyway it seems like I am the only person under 25 on these boards, but whatever. Nice to meet you all.
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sarahcrosby2

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Number of posts : 49
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Location : watford
Age : 38
Registration date : 2006-07-22

PostSubject: Re: Welcome to ED Forums!   Wed 24 Oct 2007 - 11:52

Hello evryone new and old!
Ok so I'm not 25 in age but in spirit.....!!
Hopefully if the forum is now linked to the web site we may get across to more people.
Can we post a link on the NFED web page???
Lets go global!
Sx
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Wed 24 Oct 2007 - 20:12

I did try cross-channel connections with NFED last year, but they turned my offer down on the basis that their ED network is far larger than the UK's, and they wouldn't have the manpower to be able to monitor the website for obscenities, plus I think they mentioned that they have a forum of their own???

We are linked to EDN (Ectodermale Dysplasie Nederland)

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ally



Number of posts : 1
Registration date : 2008-03-13

PostSubject: hi   Thu 13 Mar 2008 - 2:30

Hi all, have just joined the forum. I am 27 and have ED although I've had very misuable teenage years with having to wear a wig, dentures, hearing aids, over heating etc, (it was all due to self pity). I'm glad to say I come out the other side well adjusted and wouldnt change any of it. I have a son Robert 9 who has inherited ED from me but is a very humerus and happy fellow (so unlike his mother) and twin daughters Victoria and Alisha 7 who although have escaped ED havent escaped stubbornness and impatience from me - oh well.
So glad there is a forum it's so refreshing to be able to discuss ED to others other than another new doctor who no a clue!!!!!

Ally
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Mike
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Registration date : 2005-12-09

PostSubject: Re: Welcome to ED Forums!   Thu 13 Mar 2008 - 16:44

Welcome! You've made the cross-over from Facebook!

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