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#20561 - 01/22/02 03:30 PM Need a friend???
Lu Offline
Junior Member

Registered: 01/22/02
Posts: 4
Loc: Britain
Hi Guys! I'm Louise and I am 18 years old. I have ichthyosis all my life but only recently have the Doctors started trying to investigate it. I have had a skin biopsy to see what kind of Ichthyosis I have and soon will be starting a course of PUVA light therapy! I don't know anyone else with this skin complaint and am glad to have found this website. This is the forst time i have been told anything about ichthyosis as before it was treated as eczema. I would appreciate anyone emailing me to talk over commom probelms and other subjects. My email address is louisechandler18@hotmail.com look forward to hearing from you all soon. Keep Smiling, Louise xxx

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Louise Chandler
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Louise Chandler

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#20562 - 01/23/02 12:16 AM Re: Need a friend???
Lisa for Jake Offline
Member

Registered: 04/26/01
Posts: 103
Loc: Manchester, England
Hello Louise,
My name is Lisa and my son Jake (5 years old) has Nethertons Syndrome Ichthyosis. We are also in Britain and I just wanted to let you know that we have an Ichthyosis Support Group over here. We have had a couple of get togethers where around 40 families affected with ichthyosis all met up, we also have a newsletter. If you would like to get in touch the national contact is a lady called Pamelia Catlyn-Ranger and her telephone no. is 0207 461 9034. Hope this can be of some use to you, if I can help in any way please dont hesitate to email me.

Best regards

Lisa

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#20563 - 09/03/03 09:42 AM Re: Need a friend???
Jennifer F Offline
Member

Registered: 09/18/02
Posts: 15
Loc: Randleman N.C. USA
Hi Lu
my name is jennifer and i have ichthyosis. the doctors have told me i have EHK. but i am also young im 19 ill be 20 in october. but i have been learning alot about the skin disorder my self. for the past 4 years i have learned alot that i didnt know. and it makes life hard sometimes. well if you would like to talk sometime you can email me anytime. maybe i can give some advice or somthing like that.
my email is juggalette4life420@yahoo.com
signed
JENNIFER F
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Jennifer

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#20564 - 11/03/03 11:14 AM Re: Need a friend???
Diane Albone Offline
Member

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
Hi girls,

I am diane 24 years young ;-) and friends are welcome!!! I live in belgium and have EHK. So maybe i will hear from you soon.. take care Diane xxx

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#20565 - 01/07/04 07:19 PM Re: Need a friend???
Marrah-83 Offline
Member

Registered: 05/28/03
Posts: 14
Loc: Sweden
Hi Lu!
My name is Maria and i have Nethertons Syndrome. I have started to take UVA/UVB light treatments since september 2003 and I have can see an improval in my skin since then. My skin is a lot better now than the winters before, with one exception, the face. It's better but not as good as the rest of the body. So I hope that you will be better whith your light treatments as well. Write if you like, I'll answer any kind of questions you have. Take care /Maria

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Visit www.basjkirhastar.se Horses that an allergic can ride on *promise*

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#20566 - 06/09/06 02:53 AM Re: Need a friend???
heath_1985 Offline
Junior Member

Registered: 01/16/05
Posts: 2
Loc: Ontario, Canada
Hello!
My name is Heather, i'm 19 from Ontario Canada. I was born with Nethertons Syndrome and really don't know much about it. I do get sick a few times a years, where it often gets so bad that its hard to get around and do my day to day things. I've tried so many medications, and creams during those times and notting works, infact it get wrost.I was hoping to meet some other people with the same condition or one like it that can relate to my life style, and can help eachother out. I often feel like i'm the only one out there like this and would love to meet other people. you can e-mail me at heatherbabuska@hotmail.com

Heather
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Heather

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#20567 - 06/09/06 09:59 PM Re: Need a friend???
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
hi my name is dianna and i am 24 years old and have nertherton's syndrome as well. Any one in this post can feel free to contact me at diannayj@gmail.com.

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#20568 - 06/11/06 09:12 AM Re: Need a friend???
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
My daughter has NS, and sine she's too little to type (8 months old! lol), I'm writing on behalf of her! If anyone wants to contact me to discuss different skin treatments, social issues, whatever, feel free to do so at courtney.shell@gmail.com. Don't be shy!
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Courtney
Mom to Julia

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#31213 - 09/30/21 11:26 AM Re: Need a friend??? [Re: Lu]
jiuer7844 Offline
Member

Registered: 09/30/21
Posts: 18

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