Dear members, For some unknown reason, this group appears to have stopped working. The good news is that there are two other KFS groups which are thriving! So...
I am a new member but 2 years later. I would like to hear what has happened to your daughter. I have Klippel -feil and have a cerical rib, scoliosis,...
Michelle, My daughter is 3yo. She has Klippel Feil, Congenital scoliosis, Brown's syndrome in her right eye, Enlarged Vestibule aqueduct in her right ear, she...
Hi tweet_mo_b, Just a short note, because it' s Europe here and near midnight. Go to : http://members.fortunecity.com/bethc/kfs.html Below the page is the...
I don't want to keep sending all of the web page updates to all of my groups over and over again. This will be my last web page send to the whole group. Please...
I WOULD LOVE TO KEEP GETTING YOUR UPDATES ON MATTIE. PLEASE ADD ME TO YOUR LIST. GOD BLESS YOU AND YOUR FAMILY...YOU WILL BE IN MY PRAYERS..... BRANDI ... ...
Hi, I'm 38 and was diagnosed @ 27. I also have MSA(multiple system atrophy), I was wondering if anyone has any info or has heard of anyone with both...
I been searching bout KFS, I have it to. I have where I have to click my neck all the time and i am deaf in my left ear. I have biger hump on one side not bad...
My 4 year old daughter, Ashleigh has KFS. She was diagnosed at 3 months old. I would like to hear from people with KFS to interact and chat with so I can...
Hi, my name is Amy and I am 36 years old. I have this condition, and I developed a website that provides information and support for those who have this...
Me and my mom had to go same day, THey turn me down they think i didnt have the dibaily able do jobs. they were wrong to. we had to show recarod and that this...
Hi My Name is Rosa I'm 21 soon to be 22. I was told I Have KFS when I was 17 But my doctors knew sense I was like ..... 5 or so. If you are still interested in...
Rosa, I encourage you to check out my website: www.klippelfeilcommunity.com. It has a journal which is like a chat room that I hope people can access. So let...
Amy Well ok I'll check it out. But I would like to chat with you, and get feed back on some things. and your exprss. with KFS. Rosa blackwhitecat95@......
Rosa, If you cannot access the journal on my website, let me know, and of course we can communicate outside of that. No problem! I hope my website is helpful...
Hello, My name is Ewa [it's pronounced almost the same way as Eva Gardner - an actress from way back when..:o)]. I was born in Poland but for over 18 years i'm...
Eva, I did get your email! I have a website that you can check out: www.klippelfeilcommunity.com. It has a chat room, but since I started it with AOL, I...
In a message dated 9/29/2004 10:24:34 AM Eastern Standard Time, cicha@... writes: If anybody gets this, would you please let me know! I just don't want...
Kimberly, I also have KFS and am 36. No one else has it either in my family or relatives, although some have minor scoliosis. I have been told that it is ...
hello, Im 21 yrs old and also have KFS. I was going through the message board when I came along your entry. I am very curious about this corrective surgery...
Adam, I am not the one you are responding to, but I do have a website now for those with KFS, and it has an interactive journal also. I encourage you to check...
Hi everybody. I wanted to ask an advice from anybody who has been in my situation. I'm 25, My boyfriend has KFS, we been together for couple of months already,...
I am 24 years old female from england, uk. I was born with KFS condition too. I am twin, but my twin hasn't got the KFS. other facial features associated with...
In a message dated 10/18/2004 9:31:32 AM Eastern Daylight Time, wladyxxx@... writes: I still think about his KFS and even if he is the best man for me,...
Thanks Kimberly!! The baby is due on the 24th February 05! I have never met anyone who has the KFS. It is a lonley syndrome and it is a rare conditon too. I...
