I would love to get together with others with KFS, if there are others with KFS in my city ... or even talk with others in Canada with KFS. I'm in Mississauga,...
287
sheri
mass_lawgirl
Dec 29, 2007 4:16 am
Hello everyone. I am a 32 yo female in Massachusetts. I have not been diagnosed with kfs but after doing some research, I think I may have it. I've been...
288
liquidtales
Mar 24, 2008 4:01 am
I see a lot of posts of people introducing themselves. I am looking for something more action oriented. I would like to write a KFS 101 Checklist....
289
liquidtales
Mar 24, 2008 4:01 am
Did you get a diagnosis yet? Best regards, Tamara ... may ... able ... of ... (no ... and ... so I ... overweight. ... body ... my ... gym. ... or ... be ... ...
290
thecowcrazynd
Mar 24, 2008 4:01 am
I'm in Boulder Colorado, and just joined this group. Is there anything I need to know? The lay out is kind of confusing, can anyone give me a quick lowdown...
291
Shelly Lorenzen
shellylorenzen
Mar 24, 2008 6:17 pm
Our family has been very lucky I guess. We have always been able to find doctors that are familiar with klippel feil. We have met a few that had not treated...
292
Tamara
liquidtales
Mar 24, 2008 6:25 pm
I'm reposting this as it seems that this is not a very active group and well, I'd like it to be so sometimes reposting generates stuff..etc. :) ... for ... ...
293
Tamara
liquidtales
Mar 24, 2008 6:27 pm
I'll definately put that on my checklist I'm going to distrubte. That is not a suggestion I've been given. Did you do that yourself? I'm asking if you went to...
294
Shelly Lorenzen
shellylorenzen
Mar 24, 2008 7:34 pm
yes, we took our daughter to the genetics clinic. We did not go to have genetic testing done, we went to have a person to coordinate her care. Shelly -- Shelly...
295
Rosa Ch.
rosa_libra2001
Mar 24, 2008 9:35 pm
Hello Everyone Here is my story on my Genetics Specialist Back in 1999 I was 17, I had gone to my Orthopedics Doc. it was obvious that I was asking questions...
296
KimBeWavn@...
sugrbritches247
Mar 25, 2008 3:37 pm
In a message dated 3/24/2008 5:36:24 P.M. Eastern Daylight Time, rosa_libra2001@... writes: When I was 12 or 13 my rib cage was closing on me and it was...
297
Melinda
bo_and_me2004
Mar 25, 2008 4:01 pm
I do not know but i am having problems on my left side feel lke broken rib at times and swells up doctors havent even x-ray or nothing..they think its nothing...
298
Tamara McCrae
liquidtales
Mar 26, 2008 5:18 pm
I have read your posts and guess I would encourage you both to push the doctors to examine things from a different point of view, over & over...I have had to...
299
KimBeWavn@...
sugrbritches247
Mar 27, 2008 1:08 pm
In a message dated 3/27/2008 8:38:22 A.M. Eastern Daylight Time, tamara.mccrae@... writes: I have read your posts and guess I would encourage you both...
300
Rosa Ch.
rosa_libra2001
Mar 27, 2008 2:37 pm
Hello KimBeWavn What they did was, they went in an stuck metal bars in my back to stop the leaning, and there fore, stop the closing of my rib cage, hense the...
301
Armyfmly@...
Mar 27, 2008 4:04 pm
My daughter just had this done 5 months ago. They fused from T-3 all the way down to her pelvis....and they used 2 rods and many screws. Amy In a message...
302
Rosa Ch.
rosa_libra2001
Mar 27, 2008 4:39 pm
Oh wow, How is she? Is she wearing the Torso Brace? I had to, I wore it for like a good 8 months.. I think. How long was she in the Hospital for? How old is...
303
Armyfmly@...
Mar 27, 2008 4:47 pm
She is doing really good. She did not have to wear any brace after surgery. She did have some complications and they had to readmit her and open her back up...
304
KimBeWavn@...
sugrbritches247
Mar 27, 2008 5:19 pm
In a message dated 3/27/2008 10:38:06 A.M. Eastern Daylight Time, rosa_libra2001@... writes: Hello KimBeWavn What they did was, they went in an stuck...
305
Rosa Ch.
rosa_libra2001
Mar 27, 2008 6:50 pm
San Diego... Wow, how do you guys like it? Welcome to CA, are her doctors in San Diego? Armyfmly@... wrote: She is doing really good. She did not have to...
306
melinda
bo_and_me2004
Apr 29, 2008 6:12 pm
how did they find out your rib was closing in i have had CT scans etc feels like mine is but they find nothing and it feels like alot of pressure on my left...
307
Joelle
joelleph
Jul 17, 2008 7:16 pm
We had never heard of KFS until 2 weeks ago when my 6-year old daughter was diagnosed. It's been a tough 8 months but we're finally getting some answers. In...
308
AnnMarie Allen
myjimmyjam
Jul 17, 2008 11:12 pm
Wow, what a story!  If this incident did not happen in school, you would have never known! Interesting! (I hope she continues to do well). We have been...
309
melinda
bo_and_me2004
Jul 25, 2008 1:32 am
find a genic doc...
310
Susan
lraven1955
Aug 9, 2008 7:21 pm
... Is this group still active? I haven't checked in for awhile am going through my KFS groups, deciding if I should end any. Thfank you ...Susan/Raven...
311
Tammy
tammy.long35
Apr 16, 2009 10:30 pm
... My son goes to St. Louis Childrens Hospital they're familuar w/Klippel feil. they had dignose my son w/that 7 yrs ago....
312
Melinda
bo_and_me2004
Apr 16, 2009 10:37 pm
Are they helping him? I still havent fount anyone in Tennesse familiar with it.. ... From: Tammy <tammy.long35@...> Subject: [kfs] Re: Checklist, anyone?...
313
KimBeWavn@...
sugrbritches247
Apr 17, 2009 12:34 am
In a message dated 4/16/2009 6:30:49 P.M. Eastern Daylight Time, tammy.long35@... writes: Is this group still active? I haven't checked in for awhile...
314
Tammy
tammy.long35
Apr 17, 2009 1:34 am
Yes they are. I love St. Louis Childrens Hospital they are great. we go in June 18 for his neck and back (Dr. Linky) July 28 to see his eye dr. (Dr. Rallo) and...
315
Debbie s
dbrhseny
Oct 18, 2011 12:47 am
I was born with Kilppel_Feil Syndrome and have spent my whole life feeling different, it is nice to see that I am not alone. Thanks for being here. Debbie...
