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#16745 - 01/30/05 09:39 PM Have you ever met another? In person?
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I would dearly love to actually sit down and have a nice cup of coffee, or something, with somebody with CIE or EHK.
I live in Delaware and often travel to my home town of Winnipeg. I'll put myself out there if anyone is in the same boat I am.
Email me at shlyttle@hotmail.com if you are interested.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16746 - 02/22/05 07:05 PM Re: Have you ever met another? In person?
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
Hi, I am really sorry that I have responded to your posts and that I have just been bad in general at answering people lately.
That being said, except for my Dad, I have never met anyone else with the same disease as myself.
I live in Michigan and there doesn't really seem to be anyone around me to meet up with and frankly, I just haven't felt motivated to go to the conferences like everyone else.
I know I should and it might be nice to comiserate with other people but it just hasn't happened yet!

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#16747 - 10/05/05 06:06 PM Re: Have you ever met another? In person?
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
We live in NJ and would always be open to sharing and meeting new folks. Matter of fact last weekend we went to the Aquarium at Coney Island and I about fell over because I saw a women with her husband and child and she totally had EHK. I felt I was following her around like at stalker LOL -- because I so wanted to introduce myself but didn't want to embarrass her so I didn't!!!

Regards

Jenny

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#16748 - 12/01/06 04:24 PM Re: Have you ever met another? In person?
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Just an update - I have moved and I am no longer on the East coast but in the Midwest.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16749 - 12/02/06 12:14 PM Re: Have you ever met another? In person?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Jenny,

I laughed my head off when i read your post here...I too do that, if i think i see another person with EHK...it is strange how we react isn't it...or should i say everyone else would think we were strange...

and one finds themselves peering around the corner, or trying to check out the skin characteristics of the differnt body parts/joints etc...AND WE GO MAD AT PEOPLE STARRING AT US... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Pauline

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#16750 - 02/13/07 08:45 PM Re: Have you ever met another? In person?
Candy Padilla Offline
Member

Registered: 07/10/06
Posts: 5
Loc: Manila, Philippines
Hi Pauline,

I so agree with you! I saw this girl in the train who seemed to have similar signs and i was ogling at her! She looked at me and naturally I looked away...only to stare back. I KNEW she ichthyosis but I had to make sure.
So I gathered all my courage and approached her. I asked about her skin and immediately went on to say that my son (Matti) has the same condition. So there, it's so funny to know that we came from the same University here in Manila and live in the same village?! What a small world!

We've invited her over to the house and we'll be inviting her again soon. It felt good to have somebody else with a similar condition; someone to share about painful and fulfilling experiences. It must have been affirming for her too since all along she thought she was the only one who had that kind of skin (she doesn't do much research, that's why. [img]http://www.ichthyosis.com/ubb/redface.gif[/img]))

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#16751 - 09/30/07 05:22 PM Re: Have you ever met another? In person?
niko Offline
New member

Registered: 09/30/07
Posts: 4
Loc: New Zealand
I have only ever met someone once, I was around 10 years old.

It was a truly strange experience!

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#16752 - 10/01/07 12:28 AM Re: Have you ever met another? In person?
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
I have met quite a few people.. when i was 11 yrs old my parents took me to the chicago conference. if you talk to some of my frieds they will tell you a totally different story.. all along i thought i was shy and a bother.. but one girl i met (whom i still friends with) says that she was the shy one and i came along and freaked her out a little by my outgoingness to get her to be my friend...lol we laugh about it all to this day.. then i went to another conference two years after that in san diego.. funny how i don't really remember this one.. but i remember meeting back up with the best friend i had met at the previous conference.. Then things began to occur family wise and wasn't able to attend another conference till the one in atlanta summer of 06. to me this one was my favorite. My son's expression to meeting other people (other than granny and mommy) with ichthyosis will be forever etched in my memory.. he made many friends with people older than me..lol i truly believe conferences is my lifeline to meeting people that truly care and understand what im going through.. not only do we talk about our skin.. but i have found out that everyone i speak with always have alot of things in common and are just like magnets in communication and staying in touch. Sorry.. didn't mean to be so long winded.. i honestly feel if anyone has the chance to go.. it would be a shame to miss it.. i plan my life around conferences...lol i may be wierd...lol but hey that's me...lol

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#16753 - 10/02/07 06:36 PM Re: Have you ever met another? In person?
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Wow!
Here is an old thread resurrected [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Since I wrote this I haven't been able to get to a conference since they seem to converge with my being out of the country.
I am definitely going next summer and I'm totally psyched for it.

We should have an adults with EHK cocktail hour or something along with the other stuff (I don't know the agenda at all - just dreaming).

------------------
Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16754 - 10/11/07 02:18 PM Re: Have you ever met another? In person?
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Hi Sarah,
They leave plenty of time in the agenda for "hang out time." [img]http://www.ichthyosis.com/ubb/wink.gif[/img] I have an older son I could bring to babysit if needed. He is very used to our skin.
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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