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[kfs] klippel feil deformity

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  • WILLIE de GRAAF
    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.
    Message 1 of 11 , Dec 15, 1999
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      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.
    • Kristina Baby
      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
      Message 2 of 11 , Jan 2, 2000
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        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.
        >
        >------------------------------------------------------------------------
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        >
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      • Sandra King
        ... 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
        Message 3 of 11 , Apr 7 7:02 AM
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          --- 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
        • Gale Catalan
          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
          Message 4 of 11 , Apr 8 6:33 AM
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            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
            >
            >
            >
          • Gale Catalan
            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
            Message 5 of 11 , Apr 8 7:20 AM
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              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@...
              >>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
              >> >
              >> >
              >> >
              >>
              >
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            • Sandi King
              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
              Message 6 of 11 , Apr 8 9:52 PM
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                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@...
                >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
                > >
                > >
                > >
                >

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              • bree_65@yahoo.com
                ... converse ... 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
                Message 7 of 11 , Mar 5, 2001
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                  --- 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
                • aml22798@aol.com
                  In a message dated 03/05/2001 8:18:25 PM Eastern Standard Time, ... Hey... I am not sure who you were trying to respond to. I am not Willie.... =) I am Shelly
                  Message 8 of 11 , Mar 5, 2001
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                    In a message dated 03/05/2001 8:18:25 PM Eastern Standard Time,
                    bree_65@... writes:

                    > 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
                    >
                    >
                    Hey... I am not sure who you were trying to respond to. I am not Willie....
                    =) I am Shelly Mom to ten month old Mattie who has KFS and congenital
                    scoliosis. Let me know if i can be of any help.
                    Shelly
                  • Bridget Wolfe
                    Hi Shelly, I was just responding to a mail through the group that was the name on it. Sorry if wrong person. It is very sweet of you to offer your help. I
                    Message 9 of 11 , Mar 5, 2001
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                      Hi Shelly,
                      I was just responding to a mail through the group that
                      was the name on it. Sorry if wrong person. It is very
                      sweet of you to offer your help. I really dont think
                      you will be able to answer that since Mattie is so
                      young but I appreciate the offer very much. I in turn
                      will help you in any way possible just let me know.
                      How is Mattie doing? At ten months they are so fun.
                      Thanks again. Bridget

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                    • aml22798@aol.com
                      I am such a dork.... I didn t realize that the last email was from the group... I thought it was just to me. I don t get much mail from this group =) My
                      Message 10 of 11 , Mar 5, 2001
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                        I am such a dork.... I didn't realize that the last email was from the
                        group... I thought it was just to me. I don't get much mail from this group
                        =)
                        My apologies..
                        Shelly
                      • aml22798@aol.com
                        In a message dated 03/05/2001 8:56:08 PM Eastern Standard Time, ... Bridget, Mattie is doing great. She is learning how to crawl. I even found her in her crib
                        Message 11 of 11 , Mar 5, 2001
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                          In a message dated 03/05/2001 8:56:08 PM Eastern Standard Time,
                          bree_65@... writes:

                          > How is Mattie doing? At ten months they are so fun.
                          > Thanks again. Bridget
                          Bridget,
                          Mattie is doing great. She is learning how to crawl. I even found her in her
                          crib this morning standing up. She is amazing. We just found out that she is
                          anemic, but other than that her health is doing well. I am thinking about
                          finding her a new orthopedic surgeon. Hers does not seem to be with it. He is
                          supposed to be one of the better ones in the area, but he just doesn't seem
                          to be with it.
                          I guess that's all for now,
                          Shelly

                          Shelly
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