Topic Options
#20551 - 10/06/01 10:37 AM hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
Hi,everyone!
I am a 22-year-old boy.I am a Chinese and I also have Ichthyosis.My english is not very good,but i think it's enough to communicate(if you ignore some error in my issue),and sometimes you maybe need to guess my meaning in case of my misuse of words.As you know,China has a population of 1.3 billion(so there should be a lot of people having Ichthyosis).But we don't have a web site like this. When my first coming here,I had to say well,this site is wonderful. It's good for me to know that I am not alone.It's the first time in my life to open up myself,to talk about my skin to someone out of my family.My Ichthyosis is mild comparatively,so I can hide it from public.I always wear trousers and only wear T-shirt in some hot summer day.My friends maybe know that my skin is very dry,but I think they don't know anything about Ichthyosis.
I know that Ichthyosis can not be cured for now,I am here just looking for some pen-pals.I think communication is the best spiritual medicine for the disease.I don't want to have this shade in my heart for my lifetime,I want to be more open,want to have a friend with whom I can talk anything. Yes,I want to change.
here is some information about me.I am good at study,now I am a senior in an eminent university in Shanghai,I major in computer science.I love sports,music,movie,travel,etc.I love basketball,but Jordan is not my idol.In fact I am a fan of Allen Everson...
Oh,it's the longest english composition I have ever written.We can talk more if you e-mail to me.My e-mail address is yww@citiz.net.In fact,I've never have an English name before,you can call me whatever you want,maybe you can pick a name for me.Sorry for my poor English.I am waiting to hear from you.

yww
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top
#20552 - 10/07/01 07:49 PM Re: hello
Videlspider Offline
Member

Registered: 10/03/00
Posts: 9
Loc: Pamplona,Norte de Santander,Co...
hi...Well,I am not in my pc,and this have some problems with keys disposition,it is difficult,but I can do it...

My english is not so good,but I guess we can have comunication and improe together...
I am 20 years old,I am a girl and I live in Colombia,south America,even though I am from Venezuela...

I read something pretty cool on your post,the thing that gave me a motivatition for answer: yes,it es a good spiritual medicine to share our experiences,so my mail is videlspider@terra.com...

Good luck

Top
#20553 - 10/07/01 09:32 PM Re: hello
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Yww:
Welcome to the ichthyosis bulletin board and happy to came.It is fantastic to meet someone from China who has ichthyosis.You are correct there are many people in China with ichthyosis. When attending the Stanford Univ. Dermotology Dept., a Chinese inturn named Dr. Lee correctly diagnosed X linked in me and told us she knew of many cases of ichthysosis in her country.Do you know what type of ichthyosis you have?We have an ichthyosis foundation called FIRST in the U.S. For more information, their website is www.scalyskin.org or can email them at info@scalyskin.org.Also if you would like, you can join us in the ichthyosis chatroom at www.ichthyosis.com and click on chat. We meet on Wednesday nights at 6:00 P.M pacific time.We would love to have you join us. Take care Yww, by for now. Les
_________________________
Les Avakian

Top
#20554 - 10/08/01 01:06 PM Re: hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
hi,I am back again.thank you for your response and mail.
6:00 P.M pacific time,it should be 2 am GMT and so it will be 10 am beijing time,Thursday.Am I right?Oh seems I will have to play truant that day.I hope the teacher will not notice it.see you then.
yww
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top
#20555 - 10/08/01 04:04 PM Re: hello
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Greetings Yww
It would be fantastic if you can come to the ichthyosis chatroom and meet many other ichthyosis people from around the world.I hope your calculations are right.Wednesday nights 6:00 P.M. pacific time, 9:00 P.M. eastern time.Hope to see you there Yww.Take care and by for now. Les
_________________________
Les Avakian

Top
#20556 - 10/10/01 01:16 AM Re: hello
Anonymous
Unregistered


YWW,
I tried to email you 4 days ago and keep getting a "mail cannot be delivered message". Is there something wrong with your email address? Leave a message here and let us know, otherwise we will see you tomorrow???
Keith.
P.S. don't worry about your english, it is just fine.

Top
#20557 - 10/10/01 06:07 AM Re: hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
really?I don't know why you can't send me mail.you can try yww325@263.net instead.I am signing up to get a Yahoo's mail-box,but it seems to be something wrong here that I can't receive mail with my mail client.I have many more mail address.:-) like yww325@etang.com ,yww325@21cn.com.I am solving this problem.Thank you and see you tomorrow.

[This message has been edited by yww (edited October 10, 2001).]
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top
#20558 - 10/11/01 02:06 AM Re: hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
what time is it now?why can't I enter the chat room?
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top
#20559 - 10/11/01 02:26 AM Re: hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
it seems that I am late for an hour.It's pity.I should have noticed the time I posted messages,It's written that "All times are ET (US)" :-(
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top
#20560 - 10/11/01 09:39 AM Re: hello
yww Offline
Member

Registered: 10/06/01
Posts: 9
Loc: China
hi friends,now I've changed to a new e-mail address yww325@yahoo.com . Of course the old one can still be used,I just hope this new one can work better with you.bye-bye
_________________________
I am a Chinese boy with Ichthyosis,E-mail is welcomed.

Top


Copyright 2012 Ichthyosis Information