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Re: [Adults AMC] Hi I have a serious question

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  • morne vanWyk
    Hi Tracy,   Wow! That sounds serious (what u were told by the dr.). Well, my name is Morne and I am 34 years old. I have a very light form of arthrogryposis.
    Message 1 of 16 , Mar 31, 2009
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      Hi Tracy,
       
      Wow! That sounds serious (what u were told by the dr.). Well, my name is Morne and I am 34 years old. I have a very light form of arthrogryposis. From what I can remember during my childhood, me or my mom were NEVER told that I wouldn't live to see adulthood. I am currently busy with a thesis involving AMC and it revolves around the social coping experiences of an adolescent with AMC. Well, I did extencive research on arthrogryposis and some of my findings included the fact that, in general, people with AMC have a good prognosis. There are also various grades of severity and therefore it depends on how severe your arthrogryposis is. I have seen pictures of a baby who did not survive long after birth because of SEVERE AMC. But, according to my research, that is not the norm (for people NOT to survive AMC).
      There are also various types of arthrogryposis and a very small percentage could be fatal, like Distal Arthrogryposis.
       
      On your second question - well, a couple of years ago, I went to a hospital in Cape Town (I'm South African), and I wanted doctors there to tell me more about AMC. Low and behold, they couldn't because they did not know much about the condition, because it is so rare. So the asked ME to educate them about arthrogryposis, LOL!!!!!! It made me realize that all doctors actually know about AMC.....(When I visited the hospital in Cape Town, one doctor said to me that during their exams, they only had TWO questions about AMC, during the whole paper. That sums it up, doesn't it?)
       
      I think a pediatrician specializing in congenital chilhood diseases might be able to answer some of you questions.......
       
      Best wishes,
      Morne  

      --- On Wed, 4/1/09, Tracy <mountaingirl32@...> wrote:


      From: Tracy <mountaingirl32@...>
      Subject: [Adults AMC] Hi I have a serious question
      To: amc_adults@yahoogroups.com
      Date: Wednesday, April 1, 2009, 2:10 AM






      Good Evening Everyone,

      My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

      How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

      ok here is why i asked all these questions...

      I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

      so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

      and to help me feel a little bit better can you other adults with amc come and tell me your here too...

      What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

      Tracy



















      [Non-text portions of this message have been removed]
    • idp3670
      Hi Tracy, well I m 38 with AMC and know of another with AMC who has just passed 50, and another person who is older than that, as well as knowing several
      Message 2 of 16 , Apr 1, 2009
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        Hi Tracy, well I'm 38 with AMC and know of another with AMC who has just passed 50, and another person who is older than that, as well as knowing several others around my age.
        In my experience so few doctors actually know anything about AMC, the best thing to do is as you're doing and ask people who have it. And don't take one doctor's opinion as 'gospel', ask around.
        As with people who are able-bodied- try and keep as active as you can. Swimming is a lot of help if you can do it.
        Take care and all the best,
        Ian
        -- In amc_adults@yahoogroups.com, "Tracy" <mountaingirl32@...> wrote:
        >
        > Good Evening Everyone,
        >
        > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
        >
        > How many adults are in here with Arthrogryposis??? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
        >
        > ok here is why i asked all these questions...
        >
        > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
        >
        > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
        >
        > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
        >
        > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
        >
        > Tracy
        >
      • whopinwheels
        Hi Morne, I d be really interested in hearing more about what you find out with your thesis. What is your area of study? I got my BA in psychology about a year
        Message 3 of 16 , Apr 1, 2009
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          Hi Morne,
          I'd be really interested in hearing more about what you find out with your thesis. What is your area of study? I got my BA in psychology about a year ago and am contemplating grad school for the somewhat near future.
          Lauren
          --- In amc_adults@yahoogroups.com, morne vanWyk <vanwyk.morne@...> wrote:
          >
          > Hi Tracy,
          >
          > Wow! That sounds serious (what u were told by the dr.). Well, my name is Morne and I am 34 years old. I have a very light form of arthrogryposis. From what I can remember during my childhood, me or my mom were NEVER told that I wouldn't live to see adulthood. I am currently busy with a thesis involving AMC and it revolves around the social coping experiences of an adolescent with AMC. Well, I did extencive research on arthrogryposis and some of my findings included the fact that, in general, people with AMC have a good prognosis. There are also various grades of severity and therefore it depends on how severe your arthrogryposis is. I have seen pictures of a baby who did not survive long after birth because of SEVERE AMC. But, according to my research, that is not the norm (for people NOT to survive AMC).
          > There are also various types of arthrogryposis and a very small percentage could be fatal, like Distal Arthrogryposis.
          >
          > On your second question - well, a couple of years ago, I went to a hospital in Cape Town (I'm South African), and I wanted doctors there to tell me more about AMC. Low and behold, they couldn't because they did not know much about the condition, because it is so rare. So the asked ME to educate them about arthrogryposis, LOL!!!!!! It made me realize that all doctors actually know about AMC.....(When I visited the hospital in Cape Town, one doctor said to me that during their exams, they only had TWO questions about AMC, during the whole paper. That sums it up, doesn't it?)
          >
          > I think a pediatrician specializing in congenital chilhood diseases might be able to answer some of you questions.......
          >
          > Best wishes,
          > Morne
          >
          > --- On Wed, 4/1/09, Tracy <mountaingirl32@...> wrote:
          >
          >
          > From: Tracy <mountaingirl32@...>
          > Subject: [Adults AMC] Hi I have a serious question
          > To: amc_adults@yahoogroups.com
          > Date: Wednesday, April 1, 2009, 2:10 AM
          >
          >
          >
          >
          >
          >
          > Good Evening Everyone,
          >
          > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
          >
          > How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
          >
          > ok here is why i asked all these questions...
          >
          > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
          >
          > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
          >
          > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
          >
          > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
          >
          > Tracy
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          > [Non-text portions of this message have been removed]
          >
        • Jill Dude
          I to have AMC and am 31 yrs of age. When I was born the dr's told my parents that they should put me in insatution because I would be a vegitable my whole
          Message 4 of 16 , Apr 1, 2009
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            I to have AMC and am 31 yrs of age. When I was born the dr's told my parents that they should put me in insatution because I would be a vegitable my whole life. Well, that was just the oposite of what happened. Now i'm 31 and live on my own with help from PCA's. Also to this very day I still have my ortho dr since I was 2 days old. Denise

            Tracy wrote:
            > Good Evening Everyone,
            > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
            > How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
            > ok here is why i asked all these questions...
            > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
            > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
            > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
            > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
            > Tracy
            >
          • TheresaLucas
            Tracey, Im 43 (44 this Aug) with Arthrogryposis Ive never heard that no one survives adulthood with the DX of AMC. I know of a few AMCers that are older than
            Message 5 of 16 , Apr 2, 2009
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              Tracey,
              Im 43 (44 this Aug) with Arthrogryposis
              Ive never heard that no one survives adulthood with the DX of AMC.
              I know of a few AMCers that are older than me & are doing just fine!
              there are many forms?& severities of this disability, so no 2 amcers will be exactly
              ?the same or have the exact?same difficulties.
              ?I suggest you get a 2nd opinion & maybe a 3rd & 4th.
              ?Your lung issues do sound serious & I hope you get well soon!


              ~Theresa Lucas
              http://www.theresalucas.com
              Arthrogryposis Multiplex Congenita Support, Inc. ~ Vice President
              http://www.amcsupport.org
              Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


              -----Original Message-----
              From: Tracy <mountaingirl32@...>
              To: amc_adults@yahoogroups.com
              Sent: Tue, 31 Mar 2009 7:10 pm
              Subject: [Adults AMC] Hi I have a serious question






              Good Evening Everyone,

              My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

              How many adults are in here with Arthrogryposis??? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

              ok here is why i asked all these questions...

              I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

              so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

              and to help me feel a little bit better can you other adults with amc come and tell me your here too...

              What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

              Tracy








              [Non-text portions of this message have been removed]
            • J C
              Tracy,   I am 57 years old, and have (AMC). There are not many Drs. who are familiar with our disability. This definitely isn t a childhood disease. I am
              Message 6 of 16 , Apr 2, 2009
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                Tracy,
                 
                I am 57 years old, and have (AMC). There are not many Drs. who are familiar with our disability. This definitely isn't a childhood disease. I am sensitive to smoke and had asthma.
                 
                However, doctors don"t know when we shall die, God does. So, keep on holding on.
                 
                Joe

                --- On Wed, 4/1/09, Jill Dude <freakydude1357@...> wrote:


                From: Jill Dude <freakydude1357@...>
                Subject: RE: [Adults AMC] Hi I have a serious question
                To: "mountaingirl32@..." <mountaingirl32@...>
                Cc: "amc_adults@yahoogroups.com" <amc_adults@yahoogroups.com>
                Date: Wednesday, April 1, 2009, 10:28 PM







                I to have AMC and am 31 yrs of age. When I was born the dr's told my parents that they should put me in insatution because I would be a vegitable my whole life. Well, that was just the oposite of what happened. Now i'm 31 and live on my own with help from PCA's. Also to this very day I still have my ortho dr since I was 2 days old. Denise

                Tracy wrote:
                > Good Evening Everyone,
                > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
                > How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
                > ok here is why i asked all these questions...
                > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
                > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
                > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
                > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
                > Tracy
                >



















                [Non-text portions of this message have been removed]
              • Kenzie Harrison
                Hello Tracy, I am 20 about to be 21 and I have AMC. My sister who is 26 also has AMC and they told my mom my sister wouldn t live past 2 years old. Now she s
                Message 7 of 16 , Apr 2, 2009
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                  Hello Tracy,
                  I am 20 about to be 21 and I have AMC. My sister who is 26 also has AMC and they told my mom my sister wouldn't live past 2 years old. Now she's 26! My mom asked the Dr. at the time how many children they had seen with AMC and the Dr. said 4. All but my sister had muscular dystrophy and they all died. They were convinced my sister had it too because the other children they had seen did. (This was at University of Iowa Hospital Iowa City in 1982) They soon realized my sister did not and had to give up on that theory. They also recommended that my parents put her in an institution but she didn't and it's a good thing. The point is doctors don't know everything and AMC is so rare most haven't seen anyone who has it. I do think 2nd, 3rd, and even 4th opinions can't hurt. I have trouble finding physical therapists who know what to do to help me or someone who will. Now I have started pool therapy and it seems to be going well. I don't know about the lung
                  difficulties though... I wish you luck! Keep on going and don't give up, that is what I tell myself everyday.
                  Kenzie in IL

                  --- On Tue, 3/31/09, Tracy <mountaingirl32@...> wrote:


                  From: Tracy <mountaingirl32@...>
                  Subject: [Adults AMC] Hi I have a serious question
                  To: amc_adults@yahoogroups.com
                  Date: Tuesday, March 31, 2009, 6:10 PM






                  Good Evening Everyone,

                  My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

                  How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

                  ok here is why i asked all these questions...

                  I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

                  so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

                  and to help me feel a little bit better can you other adults with amc come and tell me your here too...

                  What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

                  Tracy



















                  [Non-text portions of this message have been removed]
                • Roxi McCutchan
                  Tracy, I m 38 almost 39. I have AMC, multi mini-core myopathy, scoliosis, restrictive lung disease, arthritis, osteoporosis, secondary pulmonary hypertension
                  Message 8 of 16 , Apr 3, 2009
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                    Tracy,

                    I'm 38 almost 39. I have AMC, multi mini-core myopathy, scoliosis, restrictive lung disease, arthritis, osteoporosis, secondary pulmonary hypertension and graves disease. My lung capacity is below 16%. In fact, it no longer registers on the test so we haven't been able to get a reading for 4 years now. I only weigh 78 lbs and I'm 4'10". This has helped with the lung disease as I don't have to carry alot of weight around. I do use oxygen at night and yes, it is getting worse. I see a geneticist, orthopedics, cardiac, pulmonary, endocrinology, and rhuematoid doctors. My suggestion is this: find a doctor that is interested in you even if he doesn't know amc. If he's vested or cares, he'll do everything to find out about it and the treatment. Only once have I gone to a doctor that knew my disease before I got there but all of them now are up-to-date and knowledgeable. If you are near Houston I can recommend my doctors. For the record, I was supposed to die
                    at age 12 and then it was 20, then 30 and then 35. Just do everything you can and want to and stay active. Have your doctors check your bone density even if you are young. I just found out that my bone density is that of someone in their 70's. One thing I have learned with my restrictive lung disease is that I couldn't swim. The water pressure on my chest limited my breathing.

                    If I can help, let me know.
                    Roxianna




                    ________________________________
                    From: Tracy <mountaingirl32@...>
                    To: amc_adults@yahoogroups.com
                    Sent: Tuesday, March 31, 2009 6:10:55 PM
                    Subject: [Adults AMC] Hi I have a serious question


                    Good Evening Everyone,

                    My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

                    How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

                    ok here is why i asked all these questions...

                    I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

                    so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

                    and to help me feel a little bit better can you other adults with amc come and tell me your here too...

                    What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

                    Tracy







                    [Non-text portions of this message have been removed]
                  • Capt, Kaos
                    Hi, Tracy   My name is Tim and I ve heard it all before/ BUT here I am 47 and still living and loving life. so; rock hard, live life the best you can ...
                    Message 9 of 16 , Apr 6, 2009
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                      Hi, Tracy
                       
                      My name is Tim and I've heard it all before/ BUT here I am 47 and still living and loving life. so; rock hard, live life the best you can

                      --- On Tue, 3/31/09, Tracy <mountaingirl32@...> wrote:

                      From: Tracy <mountaingirl32@...>
                      Subject: [Adults AMC] Hi I have a serious question
                      To: amc_adults@yahoogroups.com
                      Date: Tuesday, March 31, 2009, 7:10 PM






                      Good Evening Everyone,

                      My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

                      How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

                      ok here is why i asked all these questions...

                      I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

                      so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

                      and to help me feel a little bit better can you other adults with amc come and tell me your here too...

                      What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

                      Tracy



















                      [Non-text portions of this message have been removed]
                    • janet cresswell
                      Hi, Tracy I know a lot of adults with AMC; I heard one lived until she was 80 years old. I am 47 years old and live life to the full and to my restricted
                      Message 10 of 16 , Apr 14, 2009
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                        Hi, Tracy
                        I know a lot of adults with AMC; I heard one lived until she was 80 years
                        old.
                        I am 47 years old and live life to the full and to my restricted mobility.
                        Luckily I don't have internal problems with my organs but all my limbs are
                        severely affected. When I was born in 1961 My family were told I would never
                        walk, sit up and would probably die in childhood.
                        So I was put in foster care and went on to have 26 operations, 2 marriages,
                        numerous jobs, a degree in creative writing and two healthy children. So don
                        t believe the doctors just do what you can do...
                        Take Care
                        Janet from UK


                        -------Original Message-------

                        From: Capt, Kaos
                        Date: 04/06/09 19:59:39
                        To: amc_adults@yahoogroups.com
                        Subject: Re: [Adults AMC] Hi I have a serious question

                        Hi, Tracy

                        My name is Tim and I've heard it all before/ BUT here I am 47 and still
                        living and loving life. so; rock hard, live life the best you can

                        --- On Tue, 3/31/09, Tracy <mountaingirl32@...> wrote:

                        From: Tracy <mountaingirl32@...>
                        Subject: [Adults AMC] Hi I have a serious question
                        To: amc_adults@yahoogroups.com
                        Date: Tuesday, March 31, 2009, 7:10 PM

                        Good Evening Everyone,

                        My name is Tracy, 35 years Old adult with Amc... I know this may seem like a
                        silly question to ask but its an important one for me to ask and you will
                        see later on...

                        How many adults are in here with Arthrogryposis? ?? and have you ever been
                        told that amc is a childhood disability only that no one survives
                        adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE
                        STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have
                        arthrogryposis where are the doctors that take over and treat us NOW....

                        ok here is why i asked all these questions...

                        I did just get out of being in the hospital today... i was told yesterday
                        that my restrictive lung disease is not going to get better, that its going
                        to progressively get worse and could end up on a ventilator with no chance
                        of coming off it ever... and this news scared me...

                        so once again dr told me that hardly anyone with amc survive into adult hood
                        .. Wrong cause I am here and all you other ones are out there too... So
                        Doctors where are you that treat us adults...

                        and to help me feel a little bit better can you other adults with amc come
                        and tell me your here too...

                        What would you do if you were told u didnt have a lot of time to live cause
                        of the progression of your lungs???

                        Tracy

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





                        [Non-text portions of this message have been removed]
                      • morne vanWyk
                        Hi Lauren,   Um, I am still in the process of analyzing the data that I have. Some interesting things came to light during my research, with the person with
                        Message 11 of 16 , Apr 17, 2009
                        • 0 Attachment
                          Hi Lauren,
                           
                          Um, I am still in the process of analyzing the data that I have. Some interesting things came to light during my research, with the person with AMC..... 
                           
                          About your second question- I am trained as a research psychologist. I am intersted to know what your interested field in psychology is....let me know..
                           
                          Best wishes
                          Morne 

                          --- On Wed, 4/1/09, whopinwheels <LSteinberg@...> wrote:


                          From: whopinwheels <LSteinberg@...>
                          Subject: [Adults AMC] Re: Hi I have a serious question
                          To: amc_adults@yahoogroups.com
                          Date: Wednesday, April 1, 2009, 8:25 PM






                          Hi Morne,
                          I'd be really interested in hearing more about what you find out with your thesis. What is your area of study? I got my BA in psychology about a year ago and am contemplating grad school for the somewhat near future.
                          Lauren
                          --- In amc_adults@yahoogro ups.com, morne vanWyk <vanwyk.morne@ ...> wrote:
                          >
                          > Hi Tracy,
                          >
                          > Wow! That sounds serious (what u were told by the dr.). Well, my name is Morne and I am 34 years old. I have a very light form of arthrogryposis. From what I can remember during my childhood, me or my mom were NEVER told that I wouldn't live to see adulthood. I am currently busy with a thesis involving AMC and it revolves around the social coping experiences of an adolescent with AMC. Well, I did extencive research on arthrogryposis and some of my findings included the fact that, in general, people with AMC have a good prognosis. There are also various grades of severity and therefore it depends on how severe your arthrogryposis is. I have seen pictures of a baby who did not survive long after birth because of SEVERE AMC. But, according to my research, that is not the norm (for people NOT to survive AMC).
                          > There are also various types of arthrogryposis and a very small percentage could be fatal, like Distal Arthrogryposis.
                          >
                          > On your second question - well, a couple of years ago, I went to a hospital in Cape Town (I'm South African), and I wanted doctors there to tell me more about AMC. Low and behold, they couldn't because they did not know much about the condition, because it is so rare. So the asked ME to educate them about arthrogryposis, LOL!!!!!! It made me realize that all doctors actually know about AMC.....(When I visited the hospital in Cape Town, one doctor said to me that during their exams, they only had TWO questions about AMC, during the whole paper. That sums it up, doesn't it?)
                          >
                          > I think a pediatrician specializing in congenital chilhood diseases might be able to answer some of you questions... ....
                          >
                          > Best wishes,
                          > Morne
                          >
                          > --- On Wed, 4/1/09, Tracy <mountaingirl32@ ...> wrote:
                          >
                          >
                          > From: Tracy <mountaingirl32@ ...>
                          > Subject: [Adults AMC] Hi I have a serious question
                          > To: amc_adults@yahoogro ups.com
                          > Date: Wednesday, April 1, 2009, 2:10 AM
                          >
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                          >
                          >
                          > Good Evening Everyone,
                          >
                          > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
                          >
                          > How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
                          >
                          > ok here is why i asked all these questions...
                          >
                          > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
                          >
                          > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
                          >
                          > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
                          >
                          > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
                          >
                          > Tracy
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