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315
New to group 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
Debbie s
Oct 17, 2011
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314
Re: Checklist, anyone? 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
Tammy
Apr 16, 2009
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Re: Checklist, anyone? 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
KimBeWavn@...
Apr 16, 2009
#313
 
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312
Re: Checklist, anyone? Are they helping him? I still havent fount anyone in Tennesse familiar with it.. ... From: Tammy Subject: [kfs] Re: Checklist, anyone?
Melinda
Apr 16, 2009
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Re: Checklist, anyone? ... My son goes to St. Louis Childrens Hospital they're familuar w/Klippel feil. they had dignose my son w/that 7 yrs ago.
Tammy
Apr 16, 2009
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Re: Checklist, anyone? ... 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
Susan
Aug 9, 2008
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Re: Checklist, anyone? find a genic doc
melinda
Jul 24, 2008
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Re: Ahnuka's story 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
AnnMarie Allen
Jul 17, 2008
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Ahnuka's story 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
Joelle
Jul 17, 2008
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Re: Here is my story on my Genetics Specialist 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
melinda
Apr 29, 2008
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Re: Here is my story on my Genetics Specialist 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
Rosa Ch.
Mar 27, 2008
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Re: Here is my story on my Genetics Specialist 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
KimBeWavn@...
Mar 27, 2008
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Re: Here is my story on my Genetics Specialist 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
Armyfmly@...
Mar 27, 2008
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Re: Here is my story on my Genetics Specialist 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
Rosa Ch.
Mar 27, 2008
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Re: Here is my story on my Genetics Specialist 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
Armyfmly@...
Mar 27, 2008
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300
Re: Here is my story on my Genetics Specialist 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
Rosa Ch.
Mar 27, 2008
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Re: Kim & Melinda's Rib Cage Posts 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
KimBeWavn@...
Mar 27, 2008
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Kim & Melinda's Rib Cage Posts 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
Tamara McCrae
Mar 26, 2008
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Re: Here is my story on my Genetics Specialist 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
Melinda
Mar 25, 2008
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Re: Here is my story on my Genetics Specialist 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
KimBeWavn@...
Mar 25, 2008
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Here is my story on my Genetics Specialist 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
Rosa Ch.
Mar 24, 2008
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Re: Checklist, anyone? 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
Shelly Lorenzen
Mar 24, 2008
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Re: Checklist, anyone? 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
Tamara
Mar 24, 2008
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HEY! Checklist, anyone? 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 ...
Tamara
Mar 24, 2008
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Re: Checklist, anyone? 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
Shelly Lorenzen
Mar 24, 2008
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Re: Where is everyone located? 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
thecowcrazynd
Mar 23, 2008
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289
Re: I am new here. Hello everyone. Did you get a diagnosis yet? Best regards, Tamara ... may ... able ... of ... (no ... and ... so I ... overweight. ... body ... my ... gym. ... or ... be ...
liquidtales
Mar 23, 2008
#289
 
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288
Checklist, anyone? 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.
liquidtales
Mar 23, 2008
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I am new here. Hello everyone. 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
sheri
Dec 28, 2007
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Where is everyone located? 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,
jokm1234
Nov 6, 2007
#286
 
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