--- In kfs@y..., WILLIE de GRAAF <jdegraaf@t...> wrote:
> 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.


Hello Willie,
I am not a child but I have a question you might be able to help me
with. I have a lot of pain for the last few years. Have you had to
deal with any of that? If so have you found any way to stop it?
Thanks for your time.
Bridget

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. I was born with a lot of troubles. I only resently
learned the name and reason for this trouble. Two years ago in
January I started having major pain in my middle back. At the end of
the fusion they did when Iwas nine. I went through a lot of stupid
stuff before the doctors decided it was in my back. They keeped
insisting it was a lung problem. Well when I decided only way to get
any help was to research it myself. I sent to Los Angeles, California
for my childhood records. I found in it that what I had was called
kfs. I also learned that the really short neck I was born with had a
reason or I should say a cause. I also learned that it should have
been watched my whole life. This information never reached my
parents. They were told after the original fusion I would be fine.
Nobody ever told us what it was called or told us that it could cause
problems later in life. I learned all this after I got my records and
researched KFS with my mothers help.
I have looked all over the midwest to find a doctor who would be able
to help me stop the pain I am in. Basically I still have found no
help. They give me lots of pain killers to hide the symptoms but that
is all. And with them at least I can function some.
Is there anyone else out there who has pain all the time? Have any of
you found a way to stop it? I really am trying to find out if there
is anything that can be done to stop this so I can get back to a
normal life. Sorry so long but I have looked for a long time to find
more people with it that I could talk to and ask questions. Thanks
for listening. Bridget

MFapp@... a écrit :

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 lip and palate and has hemihypertrophy in the right leg.  Her neck
anomalies are extensive.  They include fusion between C2-C3, C4-C6 and a
hemivertebra at C5.  C1 appears in the CT Scan to be assimilated to the skull
base.  She also has scoliosis (30%) and sprengel's deformity on the left side.

I joined this group hoping to talk to other people affected by kfs.  I'm
interested in hearing about the care others have had and what their Dr's
protocol is as far as x-ray's, CT scan and MRI's.  Our doctor is recommending
x-rays every year and CT scan's every two years (Samantha has a pacemaker and
is unable to have a MRI).

I would also like to now if any or all suffer from chronic pain and how they
manage it.  Also, does anyone in the group have scoliosis and if so has it
progressed.

I have other question but don't want to make this post to long.  Any feed
back would be appreciated.

Thank you,

Michelle (from Connecticut)

--
Anne Falcimaigne
Responsable régionale
 

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) shoulder and migraines





Sandi King a écrit :

> 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 group.
> Don't know why.
>
> Love Sandi
>
> >From: aml22798@...
> >Reply-To: kfs@yahoogroups.com
> >To: kfs@yahoogroups.com
> >Subject: [kfs] Re: New here
> >Date: Mon, 29 Jan 2001 20:34:05 -0000
> >
> >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.
> >
>
> _________________________________________________________________________
> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.
>

--
Anne Falcimaigne
Responsable régionale

MFapp@... a écrit :

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 lip and palate and has hemihypertrophy in the right leg.  Her neck
anomalies are extensive.  They include fusion between C2-C3, C4-C6 and a
hemivertebra at C5.  C1 appears in the CT Scan to be assimilated to the skull
base.  She also has scoliosis (30%) and sprengel's deformity on the left side.

I joined this group hoping to talk to other people affected by kfs.  I'm
interested in hearing about the care others have had and what their Dr's
protocol is as far as x-ray's, CT scan and MRI's.  Our doctor is recommending
x-rays every year and CT scan's every two years (Samantha has a pacemaker and
is unable to have a MRI).

I would also like to now if any or all suffer from chronic pain and how they
manage it.  Also, does anyone in the group have scoliosis and if so has it
progressed.

I have other question but don't want to make this post to long.  Any feed
back would be appreciated.

Thank you,

Michelle (from Connecticut)

--
Anne Falcimaigne
Responsable régionale
 

=) Thanks!

Shelly
<A
HREF="http://groups.aol.com/momsinga/members_memberlist.adp?start=b,raydensmom

,2">Groups@AOL</A>
<A HREF="http://www.ememories.com/pf/default.asp/PF=969A9282B193A3">My Family
</A>
<A HREF="http://members.aol.com/kfsconxpgs/educate.htm">Learn about KFS</A>

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 group.
Don't know why.

Love Sandi

>From: aml22798@...
>Reply-To: kfs@yahoogroups.com
>To: kfs@yahoogroups.com
>Subject: [kfs] Re: New here
>Date: Mon, 29 Jan 2001 20:34:05 -0000
>
>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.
>

_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

In a message dated 01/29/2001 4:06:57 PM Eastern Standard Time,
annie.collard@... writes:

> I have on prob, I dont speak anglish.
ok

Shelly
<A
HREF="http://groups.aol.com/momsinga/members_memberlist.adp?start=b,raydensmom

,2">Groups@AOL</A>
<A HREF="http://www.ememories.com/pf/default.asp/PF=969A9282B193A3">My Family
</A>
<A HREF="http://members.aol.com/kfsconxpgs/educate.htm">Learn about KFS</A>

I have on prob, I dont speak anglish.

aml22798@... a écrit :

> 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.
>

--
Anne Falcimaigne
Responsable régionale

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.

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 ME, ARE EVER TRYING TO CONTACT WITH OTHER
PEOPLE, TO MAKE POSSIBLE KNOW ALL THINGS ABOUT THIS SINDROME. PLEASE,
ANY INFORMATION ABOUT IT, E-MAIL US. OUR DAUGHTER IS A THEASURE WE
HAVE, AND WE WANT GIVE HER ALL CHANCES TO BE AND TO HAVE A HAPPY
LIFE, HELP US, IF SOME OF YOU CAN, WITH INFORMATION.  wE PROMISS THAT
WILL TRY TO HELP ALL YOU THAT CONTACT US, WITH ALL THINGS WE KNOW
ABOUT KFS.
wE HAVE LEARNED WITH CAROLINE THAT THE BEST THING WE HAVE TO DO IS
NEVER GIVE UP TO TRY. SHE ALLWAYS REFER TO KFS LIKE "LITTLE PROBLEMS"
SHE HAS, AND WE SEE THAT, DOESN'T MATTER THE BODY WE HAVE, THE
IMPORTANT IS WHAT WE DO WITH IT. AND SHE DOES ONLY GOOD THINGS,
SMILING, STUDYING, RUNNING, PLAYING, AND, MOST OF IT, BEING AN ANGEL
IN OUR LIFES.
TO ALL YOU THAT HAS KFS, I JUST CAN SAY: "REMEMBER THAT ONLY STRONG
PEOPLE ARE SUBMITED TO STRONGS TESTS, 'CAUSE ONLY THEY HAVE FORCES TO
SURVIVE. ALL YOU ARE STRONG, I KNOW. TRUST IN GOD, THAT KNOWS EACH
ONE OF HIS SONS.
BE BLESSED.
AND NEVER LOSE THE HOPE.
PLEASE, OUR WORLD NEEDS YOUR FORCE TO TEACH US HOW TO MAKE TO BE
STRONG..

> Get Your Private, Free E-mail from MSN Hotmail at
http://www.hotmail.com.

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 syndrome was
diagnosed to her when she was born. Therefore, I supposed that her case is
more serious than Paula's one and similar to your daughter's one, Shelly. At
the present, she suffers from dystonic disturbs and is very depressed. At
first, I entered your group in the hope of getting some informations about
my niece's disease and any possible therapy for it, but useless. Anyway, if
you feel like talking about it, we will be glad to provide you with any
information which we are able to. Of course, my sister and my niece can
speak about it only from their personal experience. I beg your pardon if I
send the e-mails and not my relatives. I do that on their behalf, because
they both cannot speak English.
Rita.
----- Original Message -----
From: <aml22798@...>
To: <kfs@egroups.com>
Sent: Saturday, December 16, 2000 3:00 AM
Subject: Re: [kfs] New here


> 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
> what you have? Have they done tests for you?
> Shelly
>
>
>
>

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
what you have? Have they done tests for you?
Shelly

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 it...

Anyway I think I have to try another doctor, my doctor, when I ask him about
anything, always say for me to look in the Internet, I don't do any kind of
terapy, and I'm scared of what can happen to me.

Sorry for that words.

Do you have it?

They diagnostic that to me when I was around 12 years old, it took many
years.

I hope we can continue to speak.

Paula



>From: aml22798@...
>Reply-To: kfs@egroups.com
>To: kfs@egroups.com
>Subject: Re: [kfs] New here
>Date: Fri, 15 Dec 2000 17:11:10 EST
>
>In a message dated 12/15/2000 4:26:47 PM Eastern Standard Time,
>paulacafurtado@... writes:
>
> > 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 years old.
> >
> >  Paula
>
>
>Paula,
>Have you tried any of the other KFS groups. At first this was the only one
>I
>could find. Now it seems like they are everywhere. Do you have KFS, or
>someone else in your family?
>Shelly

_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

In a message dated 12/15/2000 4:26:47 PM Eastern Standard Time,
paulacafurtado@... writes:

> 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 years old.
>
>  Paula


Paula,
Have you tried any of the other KFS groups. At first this was the only one I
could find. Now it seems like they are everywhere. Do you have KFS, or
someone else in your family?
Shelly

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 years old.

Paula


>From: "Shelly  " <aml22798@...>
>Reply-To: kfs@egroups.com
>To: kfs@egroups.com
>Subject: [kfs] New here
>Date: Thu, 14 Dec 2000 21:45:40 -0000
>
>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 ideas on where to go for info?
>Shelly
>

_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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 ideas on where to go for info?
Shelly

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 generations. Between us we have missed carried babies and have come
to understan that only the strong survive. No matter what faces a KFS
person we cope with alot. I hope you continue to enjoy her. Gale

At 08:43 16/05/00 -0700, you wrote:
>   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 to hear from someone soon.   Jodie
>
>

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 is to do with kfs.
I thought that I would pass on the name of that group for you to pursue if
you wish. The group is O-circle-O, they may be of some help to you also.

Good luck with your niece.

Best wishes
Sandi
________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

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, because he is my brother-in-law and is trying to gather
informations about Klippel Feil Syndrome, too.
> Regards
Rita



----- Original Message -----
From: Gale Catalan <g.catalan@...>
To: <kfs@eGroups.com>
Sent: Saturday, April 08, 2000 7:13 PM
Subject: Re: [kfs] Klippel Feil


> 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 and let me know how it works out, good luck
> Gale
> At 12:10 28/03/00 +0200, you wrote:
> >   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
> >       eGroups.com Home: http://www.egroups.com/group/kfs
> > www.egroups.com - Simplifying group communications
> >   Attachment Converted: "c:\eudora\attach\Gaia.doc"
>
>
> ------------------------------------------------------------------------
> You can win $1000!
> Just one of 1000 great reasons to visit eGroups!
> Click here:
> http://click.egroups.com/1/2865/0/_/21058/_/955213640/
> ------------------------------------------------------------------------
>

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 and let me know how it works out, good luck
Gale
At 12:10 28/03/00 +0200, you wrote:
>   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
>       eGroups.com Home: http://www.egroups.com/group/kfs
> www.egroups.com - Simplifying group communications
>   Attachment Converted: "c:\eudora\attach\Gaia.doc"

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
another little girl living not far from this lady so I will sign off now
and search my files for the contact. It not at hand as I have not been
doing anything in this area for quite a while. Bye for now Gale

At 23:52 8/04/00 EST, you wrote:
>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
>not sure how it works.
>
>I became a member yesterday, and I read Willie's letter, and wrote one
>myself to Willie, hoping that he may contact me. I have only received 2
>letters from you, but nothing from Willie.
>
>I was actually going to write to you anyway. I live in Boronia in Victoria,
>Australia. I have a friend over in Perth.
>
>I would love to discuss KFS further with you, re:support groups, personal
>experience etc
>
>Hope to hear from you soon, if you are interested.
>
>thankyou for contacting me
>Sincerely
>Sandra King
>>From: Gale Catalan <g.catalan@...>
>>Reply-To: kfs@egroups.com
>>To: kfs@eGroups.com
>>Subject: Re: [kfs] klippel feil deformity
>>Date: Sat, 08 Apr 2000 21:33:49 +0800
>>
>>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
>>link a person with some one in the same city or state. I hope you dont
>>mind, Bye Gale
>>At 05:53 15/12/99 -0700, you wrote:
>> >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.
>> >
>> >------------------------------------------------------------------------
>> >Get 75% Off Our Best Selling Health and Wellness Books!
>> >SelfCare.com has everything you need to take care of you and your family,
>> >plus spend $40 or more and your shipping is free!
>> >http://clickhere.egroups.com/click/1824
>> >
>> >
>> >
>> >eGroups.com Home: http://www.egroups.com/group/kfs/
>> >http://www.egroups.com - Simplifying group communications
>> >
>> >
>> >
>>
>
>______________________________________________________
>Get Your Private, Free Email at http://www.hotmail.com
>
>
>------------------------------------------------------------------------
>Earn $500 by transferring your big list to eGroups.
>For details click here:
>http://click.egroups.com/1/2980/0/_/21058/_/955201954/
>------------------------------------------------------------------------
>
>
>

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
not sure how it works.

I became a member yesterday, and I read Willie's letter, and wrote one
myself to Willie, hoping that he may contact me. I have only received 2
letters from you, but nothing from Willie.

I was actually going to write to you anyway. I live in Boronia in Victoria,
Australia. I have a friend over in Perth.

I would love to discuss KFS further with you, re:support groups, personal
experience etc

Hope to hear from you soon, if you are interested.

thankyou for contacting me
Sincerely
Sandra King
>From: Gale Catalan <g.catalan@...>
>Reply-To: kfs@egroups.com
>To: kfs@eGroups.com
>Subject: Re: [kfs] klippel feil deformity
>Date: Sat, 08 Apr 2000 21:33:49 +0800
>
>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
>link a person with some one in the same city or state. I hope you dont
>mind, Bye Gale
>At 05:53 15/12/99 -0700, you wrote:
> >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.
> >
> >------------------------------------------------------------------------
> >Get 75% Off Our Best Selling Health and Wellness Books!
> >SelfCare.com has everything you need to take care of you and your family,
> >plus spend $40 or more and your shipping is free!
> >http://clickhere.egroups.com/click/1824
> >
> >
> >
> >eGroups.com Home: http://www.egroups.com/group/kfs/
> >http://www.egroups.com - Simplifying group communications
> >
> >
> >
>

______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com

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
link a person with some one in the same city or state. I hope you dont
mind, Bye Gale
At 05:53 15/12/99 -0700, you wrote:
>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.
>
>------------------------------------------------------------------------
>Get 75% Off Our Best Selling Health and Wellness Books!
>SelfCare.com has everything you need to take care of you and your family,
>plus spend $40 or more and your shipping is free!
>http://clickhere.egroups.com/click/1824
>
>
>
>eGroups.com Home: http://www.egroups.com/group/kfs/
>http://www.egroups.com - Simplifying group communications
>
>
>

--- In kfs@egroups.com, WILLIE de GRAAF <jdegraaf@t...>  wrote:
>  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.

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
regarding this disease, your experiences, feelings and thoughts will
help me to, perhaps deal with what we may be facing in the future.
Anxiously awaiting you reply.

Sincerely Sandra King

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 it is genetic. Please write back to talk, bye for now Gale in
Perth Australia.


At 05:53 15/12/99 -0700, you wrote:
>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.
>
>------------------------------------------------------------------------
>Get 75% Off Our Best Selling Health and Wellness Books!
>SelfCare.com has everything you need to take care of you and your family,
>plus spend $40 or more and your shipping is free!
>http://clickhere.egroups.com/click/1824
>
>
>
>eGroups.com Home: http://www.egroups.com/group/kfs/
>http://www.egroups.com - Simplifying group communications
>
>
>

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.