This is an open forum for persons affected by Klippel-Feil Syndrome, family and medical professionals seeking to provide information and/or support for...
2
WILLIE de GRAAF
jdegraaf@...
Dec 16, 1999 1:02 am
I have lived with this disease for 37 years now and I hope to converse with a mother who's child might have this disease and hopefully give some info....
3
Kristina Baby
g.catalan@...
Jan 2, 2000 10:49 am
I too have lived with this condition for 56 years. My children have the condition as well as one of my grandaughters. I have a mild form of KFS but in my case...
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Rita Antonini
hjiant@...
Mar 28, 2000 8:26 pm
We are interested in finding out an appropriated treatment or/and therapy for Gaia's disease. Could you help us? It is really urgent! Thanks. Gaia's family...
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Sandra King
sandifay@...
Apr 7, 2000 2:02 pm
... converse ... Hi Willie, My name is Sandra King. I have a little boy of 19 months old who has been diagnose with KFS. I would really like to chat with you ...
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Gale Catalan
g.catalan@...
Apr 8, 2000 1:28 pm
Dear Willie I sent your letter onto Sandra. I would like to know where you live,State and country as I come across people all over the world and sometime I can...
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Sandi King
sandifay@...
Apr 8, 2000 1:52 pm
Hi Gale, My name is Sandra King. I think that you may be confused about who I am, unless being a member of egroup, I get letters sent to other people too. I'm ...
8
Gale Catalan
g.catalan@...
Apr 8, 2000 2:14 pm
Hi Sanda I have a friend in Melbourne who has a little girl with KFS. I will send her e-mail on to you when I find it and I expect to do it tonight there is ...
9
Gale Catalan
g.catalan@...
Apr 8, 2000 5:07 pm
I have an address of a man who has a member of his family with KFS. Alberto Bogazzi of Rome Italy, E-mail <a.bogazzi@...> see how that works out for you...
10
Rita Antonini
hjiant@...
Apr 19, 2000 5:56 pm
Thank you very much for having answered to my e-mail. I was not sure if you had received it. Besides I can read the post only now. I know Alberto Bogazzi,...
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Sandi King
sandifay@...
May 9, 2000 11:32 pm
Dear Rita, My name is Sandra King, you probably already know that I am a member of this group also. I am also a member of another group, within egroups, that...
12
Jodie
osborne@...
May 16, 2000 3:47 pm
Hi Everyone! It is sure quiet so am not sure if I am in the right group. Our daughter has KFS and is now 6 years old. She is very active and loves life. I hope...
13
Gale Catalan
g.catalan@...
Aug 16, 2000 12:19 pm
Jodie I dont know if we spoke before I was just clearing out my e-mail. Your little girl is a strong one I know as I am one of a family of 14 with KFS over 5...
14
Shelly
aml22798@...
Dec 14, 2000 9:45 pm
I just wanted to see if this group was still active. Is anyone out there? I am looking for info on KFS. My 7 month old has just been diagnosed with it. Any...
15
Paula Cristina
paulacafurtado@...
Dec 15, 2000 9:16 pm
Hello Shelly, I'm new here too, I'm here for at least 1,5 months... I think, and untill now, you are the person who have sent a message. I'm From Portugal, 24...
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aml22798@...
Dec 15, 2000 10:11 pm
In a message dated 12/15/2000 4:26:47 PM Eastern Standard Time, ... Paula, Have you tried any of the other KFS groups. At first this was the only one I could...
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Paula Cristina
paulacafurtado@...
Dec 16, 2000 1:30 am
Well, I only try these group, I have kfs, That's what the doctor said, it's dificult to me to accept that because I read a lot and I don't see how can I have...
18
aml22798@...
Dec 16, 2000 2:00 am
Paula, I do not have it. My seven month old daughter does. I am sure she does from all of the side effects from it that she has. Why don't you think that is ...
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Rita Antonini
hjiant@...
Dec 16, 2000 11:56 am
Shelly and Paula, I'm Rita and live in Italy. I'm not affected by KFs, but my niece. That is why I have entered your group. She is 34 years old and the...
HEI, PEOPLE, THERE ARE SO MANY PEOPLE IN THE WORLD WHO HAS THIS DISEASE. MY DAUGHTER, CAROLINE, IS ONE OF THEM. SHE IS 11 YEARS OLD, AND WE BOTH, MY WIFE AND...
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aml22798@...
Jan 29, 2001 8:43 pm
I just wanted to see if anyone was still on here? i have not gotten mail from this group in over a month.. Let me know if you are still out there....
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Annie Collard
annie.collard@...
Jan 29, 2001 9:00 pm
I have on prob, I dont speak anglish. ... -- Anne Falcimaigne Responsable régionale...
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aml22798@...
Jan 29, 2001 11:08 pm
In a message dated 01/29/2001 4:06:57 PM Eastern Standard Time, ... ok Shelly <A HREF="http://groups.aol.com/momsinga/members_memberlist.adp?start=b,raydensmom...
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Sandi King
sandifay@...
Jan 31, 2001 12:36 am
Hi Shelly It's sandi again......this group hardly ever has any mail. That's why i sent you to O-circle group, coz there is never any corresponance in this...
Hi, My name is Michelle and I have a 4 year old daughter with KFS. She was diagnosed about two years. Samantha was also born with a heart defect (VSD), cleft...
Hello, I am a woman of 25 with the kfs, I would like to know if in time there are problems which appear. I already have problem of pain in the straight(right)...
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Annie Collard
annie.collard@...
Feb 7, 2001 7:45 pm
Hello Michelle, I am suffering from time to time and I should learn(teach) has to live with. When that I badly in the shoulder I have baths warmly and on the...
30
bree_65@...
Feb 17, 2001 3:23 pm
Hi all, Thank you for letting me join your group. I have been looking for more people who have kfs. well let me tell you a little about me. I am 35 years old....
