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New York Area Doctor

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  • dannyg887
    I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated the symptoms of Arthrogryposis like my scoliosis and related breathing
    Message 1 of 6 , Sep 14, 2009
      I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated the symptoms of Arthrogryposis like my scoliosis and related breathing limitations all my life and never really concentrated on seeing a doctor for my Arthrogryposis since i was very young. Staying active and PT was always the best treatment.

      I write to this group today to see if there is a doctor anywhere on the east coast, specifically the NYC Area, that specializes in Arthrogryposis that i can get an updated diagnosis on the type I have. My wife and i are looking to have children and want to make sure the chances are good that this is not something i can pass to them.

      I have read a lot that seems to make me think the form i have is not something that can be passed down but my brother was born with clubbed feet and getting an updated diagnosis is probably something good to have. My brother did have a heathy baby girl a year and a half ago.

      Any and all information will be greatly appreciated. Thank you for your time. Dan
    • Tiffany Holmlund
      Hi, My name is Tiffany, I m 33 and I have the worst type of AMC but I have a 13 year-old and a 10 year-old daughter and both are healthy as a horse. My son
      Message 2 of 6 , Sep 14, 2009
        Hi, My name is Tiffany, I'm 33 and I have the worst type of AMC but I have a 13 year-old and a 10 year-old daughter and both are healthy as a horse. My son runs in Track and my daughter dances. I did swim, play baseball, volley ball, and I have won 12 blue ribbons in horse shows. I do not show anymore due to chronic back pain
         
        I recently had a collapsed lung and have found myself getting weaker in my legs. I fall more then I ever have. I too need a doctor in the Illinois area to help figure out exactly whats going on. I do walk more now due to my electric chair dying on me three months ago and I can't push the manual. I have lost my medical card so I can't get a new chair. I could use information on help to obtaining one.
         
        Thanks,
        Tiny Tiger!

        --- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


        From: dannyg887 <dannyg887@...>
        Subject: [Adults AMC] New York Area Doctor
        To: amc_adults@yahoogroups.com
        Date: Monday, September 14, 2009, 10:49 AM


         




        I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated the symptoms of Arthrogryposis like my scoliosis and related breathing limitations all my life and never really concentrated on seeing a doctor for my Arthrogryposis since i was very young. Staying active and PT was always the best treatment.

        I write to this group today to see if there is a doctor anywhere on the east coast, specifically the NYC Area, that specializes in Arthrogryposis that i can get an updated diagnosis on the type I have. My wife and i are looking to have children and want to make sure the chances are good that this is not something i can pass to them.

        I have read a lot that seems to make me think the form i have is not something that can be passed down but my brother was born with clubbed feet and getting an updated diagnosis is probably something good to have. My brother did have a healthy baby girl a year and a half ago.

        Any and all information will be greatly appreciated. Thank you for your time. Dan



















        [Non-text portions of this message have been removed]
      • morne vanWyk
        Hi Dan,   My name is Morne, I m 34 and I m writing from South Africa. I am currently in the process of finising a thesis on the social effects of
        Message 3 of 6 , Sep 18, 2009
          Hi Dan,
           
          My name is Morne, I'm 34 and I'm writing from South Africa. I am currently in the process of finising a thesis on the social effects of arthrogryposis on such individual (I'm studying towards a Masters degree in Research Psychology). I live with mild arthrogryposis as well. Well, because of my thesis, I did a lot of reading about A.M.C. Literature suggests that arthrogryposis is not an heridetary condition. So, you can't pass it on to your kids. The fact that your brother has a healthy little girl, bears testimony to that. I have read a lot about other A.M.C.'ers who have healthy children. What I'll suggest is that you read up a bit more on arthrogryposis or contact Avenues for some info. I hope this helps.....
           
          Good luck!
           
          Kind regards
          Morne
           
            

          --- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


          From: dannyg887 <dannyg887@...>
          Subject: [Adults AMC] New York Area Doctor
          To: amc_adults@yahoogroups.com
          Date: Monday, September 14, 2009, 6:49 PM


           




          I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated the symptoms of Arthrogryposis like my scoliosis and related breathing limitations all my life and never really concentrated on seeing a doctor for my Arthrogryposis since i was very young. Staying active and PT was always the best treatment.

          I write to this group today to see if there is a doctor anywhere on the east coast, specifically the NYC Area, that specializes in Arthrogryposis that i can get an updated diagnosis on the type I have. My wife and i are looking to have children and want to make sure the chances are good that this is not something i can pass to them.

          I have read a lot that seems to make me think the form i have is not something that can be passed down but my brother was born with clubbed feet and getting an updated diagnosis is probably something good to have. My brother did have a heathy baby girl a year and a half ago.

          Any and all information will be greatly appreciated. Thank you for your time. Dan



















          [Non-text portions of this message have been removed]
        • Dan Gentile
          Thank you for that info. Dan Gentile 516.443.2041 Sent from my iPhone On Sep 18, 2009, at 7:09 AM, morne vanWyk ... [Non-text portions
          Message 4 of 6 , Sep 18, 2009
            Thank you for that info.

            Dan Gentile
            516.443.2041
            Sent from my iPhone

            On Sep 18, 2009, at 7:09 AM, morne vanWyk <vanwyk.morne@...>
            wrote:

            > Hi Dan,
            >
            > My name is Morne, I'm 34 and I'm writing from South Africa. I am
            > currently in the process of finising a thesis on the social effects
            > of arthrogryposis on such individual (I'm studying towards a Masters
            > degree in Research Psychology). I live with mild arthrogryposis as
            > well. Well, because of my thesis, I did a lot of reading about
            > A.M.C. Literature suggests that arthrogryposis is not an heridetary
            > condition. So, you can't pass it on to your kids. The fact that your
            > brother has a healthy little girl, bears testimony to that. I have
            > read a lot about other A.M.C.'ers who have healthy children. What
            > I'll suggest is that you read up a bit more on arthrogryposis or
            > contact Avenues for some info. I hope this helps.....
            >
            > Good luck!
            >
            > Kind regards
            > Morne
            >
            >
            >
            > --- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:
            >
            > From: dannyg887 <dannyg887@...>
            > Subject: [Adults AMC] New York Area Doctor
            > To: amc_adults@yahoogroups.com
            > Date: Monday, September 14, 2009, 6:49 PM
            >
            >
            >
            > I am 32 years old and was diagnosed with Arthrogryposis at birth. I
            > have treated the symptoms of Arthrogryposis like my scoliosis and
            > related breathing limitations all my life and never really
            > concentrated on seeing a doctor for my Arthrogryposis since i was
            > very young. Staying active and PT was always the best treatment.
            >
            > I write to this group today to see if there is a doctor anywhere on
            > the east coast, specifically the NYC Area, that specializes in
            > Arthrogryposis that i can get an updated diagnosis on the type I
            > have. My wife and i are looking to have children and want to make
            > sure the chances are good that this is not something i can pass to
            > them.
            >
            > I have read a lot that seems to make me think the form i have is not
            > something that can be passed down but my brother was born with
            > clubbed feet and getting an updated diagnosis is probably something
            > good to have. My brother did have a heathy baby girl a year and a
            > half ago.
            >
            > Any and all information will be greatly appreciated. Thank you for
            > your time. Dan
            >
            > [Non-text portions of this message have been removed]
            >
            >


            [Non-text portions of this message have been removed]
          • Patty Clarke
            HI Morne, I would love to read your thesis. I don t have masters in Psychology but I do have a Bachelor s and I also have AMC. It affects me pretty
            Message 5 of 6 , Sep 18, 2009
              HI Morne, I would love to read your thesis. I don't have masters in
              Psychology but I do have a Bachelor's and I also have AMC. It affects me
              pretty significantly but I am independent, work, drive etc. Is your thesis
              going to be online at all?



              Patty.



              From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
              Behalf Of morne vanWyk
              Sent: September-18-09 7:10 AM
              To: amc_adults@yahoogroups.com
              Subject: Re: [Adults AMC] New York Area Doctor





              Hi Dan,

              My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
              in the process of finising a thesis on the social effects of arthrogryposis
              on such individual (I'm studying towards a Masters degree in Research
              Psychology). I live with mild arthrogryposis as well. Well, because of my
              thesis, I did a lot of reading about A.M.C. Literature suggests that
              arthrogryposis is not an heridetary condition. So, you can't pass it on to
              your kids. The fact that your brother has a healthy little girl, bears
              testimony to that. I have read a lot about other A.M.C.'ers who have healthy
              children. What I'll suggest is that you read up a bit more on arthrogryposis
              or contact Avenues for some info. I hope this helps.....

              Good luck!

              Kind regards
              Morne



              --- On Mon, 9/14/09, dannyg887 <dannyg887@... <mailto:dannyg887%40me.com>
              > wrote:

              From: dannyg887 <dannyg887@... <mailto:dannyg887%40me.com> >
              Subject: [Adults AMC] New York Area Doctor
              To: amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com>
              Date: Monday, September 14, 2009, 6:49 PM



              I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
              treated the symptoms of Arthrogryposis like my scoliosis and related
              breathing limitations all my life and never really concentrated on seeing a
              doctor for my Arthrogryposis since i was very young. Staying active and PT
              was always the best treatment.

              I write to this group today to see if there is a doctor anywhere on the east
              coast, specifically the NYC Area, that specializes in Arthrogryposis that i
              can get an updated diagnosis on the type I have. My wife and i are looking
              to have children and want to make sure the chances are good that this is not
              something i can pass to them.

              I have read a lot that seems to make me think the form i have is not
              something that can be passed down but my brother was born with clubbed feet
              and getting an updated diagnosis is probably something good to have. My
              brother did have a heathy baby girl a year and a half ago.

              Any and all information will be greatly appreciated. Thank you for your
              time. Dan

              [Non-text portions of this message have been removed]





              [Non-text portions of this message have been removed]
            • morne vanWyk
              Hi Patty,   Well, I think that you d have to go to our university s website to access it. I actually wanted to publish it. I have spoken to my promotor about
              Message 6 of 6 , Sep 20, 2009
                Hi Patty,
                 
                Well, I think that you'd have to go to our university's website to access it. I actually wanted to publish it. I have spoken to my promotor about it. If so, it'll definitely be online. So, we are still looking into such possibilities. I regard this thesis as my 'baby' because I wanted to do a thesis on AMC to find out how it affects others who have the same condition as myself.
                 
                Well, it is good to know that you are independent and that AMC doesn't control your life. I can drive as well, but I don't have a drivers' licence. The reason for that is that I keep putting it off. Can you believe that?!! LOL!!!
                 
                Cheers
                Morne 

                --- On Fri, 9/18/09, Patty Clarke <pelclarke@...> wrote:


                From: Patty Clarke <pelclarke@...>
                Subject: RE: [Adults AMC] New York Area Doctor
                To: amc_adults@yahoogroups.com
                Date: Friday, September 18, 2009, 9:27 PM


                 



                HI Morne, I would love to read your thesis. I don't have masters in
                Psychology but I do have a Bachelor's and I also have AMC. It affects me
                pretty significantly but I am independent, work, drive etc. Is your thesis
                going to be online at all?

                Patty.

                From: amc_adults@yahoogro ups.com [mailto:amc_adults@yahoogro ups.com] On
                Behalf Of morne vanWyk
                Sent: September-18- 09 7:10 AM
                To: amc_adults@yahoogro ups.com
                Subject: Re: [Adults AMC] New York Area Doctor

                Hi Dan,

                My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
                in the process of finising a thesis on the social effects of arthrogryposis
                on such individual (I'm studying towards a Masters degree in Research
                Psychology). I live with mild arthrogryposis as well. Well, because of my
                thesis, I did a lot of reading about A.M.C. Literature suggests that
                arthrogryposis is not an heridetary condition. So, you can't pass it on to
                your kids. The fact that your brother has a healthy little girl, bears
                testimony to that. I have read a lot about other A.M.C.'ers who have healthy
                children. What I'll suggest is that you read up a bit more on arthrogryposis
                or contact Avenues for some info. I hope this helps.....

                Good luck!

                Kind regards
                Morne



                --- On Mon, 9/14/09, dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com>
                > wrote:

                From: dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com> >
                Subject: [Adults AMC] New York Area Doctor
                To: amc_adults@yahoogro ups.com <mailto:amc_ adults%40yahoogr oups.com>
                Date: Monday, September 14, 2009, 6:49 PM

                I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
                treated the symptoms of Arthrogryposis like my scoliosis and related
                breathing limitations all my life and never really concentrated on seeing a
                doctor for my Arthrogryposis since i was very young. Staying active and PT
                was always the best treatment.

                I write to this group today to see if there is a doctor anywhere on the east
                coast, specifically the NYC Area, that specializes in Arthrogryposis that i
                can get an updated diagnosis on the type I have. My wife and i are looking
                to have children and want to make sure the chances are good that this is not
                something i can pass to them.

                I have read a lot that seems to make me think the form i have is not
                something that can be passed down but my brother was born with clubbed feet
                and getting an updated diagnosis is probably something good to have. My
                brother did have a heathy baby girl a year and a half ago.

                Any and all information will be greatly appreciated. Thank you for your
                time. Dan

                [Non-text portions of this message have been removed]

                [Non-text portions of this message have been removed]



















                [Non-text portions of this message have been removed]
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