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  • misskatyoak
    hi there my name is katherine, i am 20 and i have arthrogryposis. i dont really know much about it cause its never really affected me that much. thats kinda
    Message 1 of 5 , Jun 7, 2006
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      hi there my name is katherine, i am 20 and i have arthrogryposis. i
      dont really know much about it cause its never really affected me
      that much. thats kinda why i am on here. i have had 4 surgeries due
      to the arthrogryposis. twice on my hands when they took skin from my
      side and put in on the inside of a few of my fingers to allow them
      to stretch. and then three times on my feet to pull them away from
      my ankles annitially and then later to straighten them out. anyway
      my point is, that even though i have had these things its never
      really affected me in any sort of way. i can function fully on my
      own. only when i had the casts from the surgeries did i need a
      walker or crutches. the doctors always told me that i had one of the
      mildest cases they had ever seen. i went to a hospital in seattle
      when i was like 13 and they told me there were a few things they
      could try but there really wasnt any point because i didnt have it
      bad enough. there is a distant second cousin of mine that also has
      arhrogryposis but she has it much worse. she can barly move her arms
      and she needs help with everything. i guess the reason i am on this
      is to ask if anyone else has a mild case because everywhere i go it
      seems that people have to have help with most things to braces or
      other such things. arthrogryposis hasnt really done anything, i like
      how it makes my fingers a little funny looking. the scoliosis is the
      thing that affected me the most. i had to have a metal rod but in my
      back when i was 13. its ok now but thats the biggest thing i had to
      deal with. anyway, if anyone has anything to say i would love to
      hear from you. i know there are probably lots of spelling errors,
      sorry.
    • MALIA CARSON
      Hi Katherine My name is Malia, I live in Hawaii and I have two children with Arthrogryposis, my son Dyce is 3 he has Arthrogryposis as well as Escobar
      Message 2 of 5 , Jun 9, 2006
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        Hi Katherine
        My name is Malia, I live in Hawaii and I have two children with Arthrogryposis, my son Dyce is 3 he has Arthrogryposis as well as Escobar Syndrome, he has Ptosis (droopy eye lid), stiff legs, club feet and yes the crooked fingers also. He also has an ASD, Atrial Septal Defect (hole in his heart). He has had surgery on his feet and dislocated hip when he was 7mos and again at 19 mos. He has a mild case too, he can walk, but has a hard time bending his knees, so if he falls down he has a hard time getting back up. He also has indwelling thumbs, but manages very well.
        My daughter Deja is 7 mos with Arthrogryposis as well as Escobar Syndrome and also has scoliosis, which was just recently diagnosed this past March when she was only 5 mos. She has the same dislocated hip, and club feet as Dyce, she doesnt have the droopy eye lid, but she too has a hole in her heart also. We dont know how bad her scoliosis is, she receives therapy every week and I have been seeing a chiropractor on the side without telling the therapist and after Deja's first adjustment, the therapist could notice her spine getting straighter, she was very confused, but I refuse to let her know about the Chiropractor visits. The Chiropractor is very helpful, and very educational, you can learn alot from them. But it is also very pricey. Deja's fingers are crooked also and her wrists are tight just like her brothers. But Dyce manages very well, and compensates where he lacks range of motion. He is very determined to be like everyone else.
        I thank you for your story, you sound like a very strong and courageous young woman. I wish you the best.
        We have learned that everybody in this world are carriers of at least 7-10 birth defects, but in order for the child to be affected, both mom and dad has to be carriers of the same defected gene. I have three other children from a previous marriage who arent affected at all. Now Ive got two children with the same defects. Life is hard, but we manage.
        Thank you again for sharing your story.
        Aloha,
        Malia

        misskatyoak <misskatyoak@...> wrote:
        hi there my name is katherine, i am 20 and i have arthrogryposis. i
        dont really know much about it cause its never really affected me
        that much. thats kinda why i am on here. i have had 4 surgeries due
        to the arthrogryposis. twice on my hands when they took skin from my
        side and put in on the inside of a few of my fingers to allow them
        to stretch. and then three times on my feet to pull them away from
        my ankles annitially and then later to straighten them out. anyway
        my point is, that even though i have had these things its never
        really affected me in any sort of way. i can function fully on my
        own. only when i had the casts from the surgeries did i need a
        walker or crutches. the doctors always told me that i had one of the
        mildest cases they had ever seen. i went to a hospital in seattle
        when i was like 13 and they told me there were a few things they
        could try but there really wasnt any point because i didnt have it
        bad enough. there is a distant second cousin of mine that also has
        arhrogryposis but she has it much worse. she can barly move her arms
        and she needs help with everything. i guess the reason i am on this
        is to ask if anyone else has a mild case because everywhere i go it
        seems that people have to have help with most things to braces or
        other such things. arthrogryposis hasnt really done anything, i like
        how it makes my fingers a little funny looking. the scoliosis is the
        thing that affected me the most. i had to have a metal rod but in my
        back when i was 13. its ok now but thats the biggest thing i had to
        deal with. anyway, if anyone has anything to say i would love to
        hear from you. i know there are probably lots of spelling errors,
        sorry.







        Malia
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      • misskatyoak
        if you ever have any questions that you would like to have me answer please feel free. i was also born with club feet but i havnt ever really heard much about
        Message 3 of 5 , Jun 10, 2006
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          if you ever have any questions that you would like to have me answer
          please feel free. i was also born with club feet but i havnt ever
          really heard much about it. i dont know if it went away or what.
          although i was treated for everything i ever had i dont think my
          parents were every really informed to great details of what exactly
          everything was. and now that i am so much older and not totally
          affected anymore we just dont really look into it. just recently i have
          become more intereted in things. i've always wanted to help those
          people like yourself who have kids and answer any questions, from an
          experienced point of view.
          i know my moms side has arhtrogrypoisis but there has never been any
          mention from my dads side.
          have a good day.
          katherine
        • pam sears
          Hi Katherine, Im 48 and am a very mild case as well. Ive lived a very normal life with no surgeries. my parents learned there lesson on my brother who had many
          Message 4 of 5 , Jun 25, 2007
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            Hi Katherine, Im 48 and am a very mild case as well. Ive lived a very normal life with no surgeries. my parents learned there lesson on my brother who had many that were never very successful. I have one son who has it mild too and two other kids that dont have it all. Now in my later years i am having some respitory problems that they have decided is from the artro. A very wise Dr. sent me to a geneticist, which are hard to come by with much knowledge on AMC and had me get in a genetic study. After some research told me i have DA5 distal arthrogryposis 5. They told me saying you have AMC is too broad that it has 12 different types and mine is DA5 has to do with stiffness in eye movement and pulmonary too, along with all the other stiff joints. I am pretty much affected everywhere just not very severe. most people just notice i cant walk flat footed and my fingers dont go straight nor can i make a fist.
            When i read the stories of most of the others I feel like i dont really fit in as most are so much more severe.Im just trying to find others with pulmonary problems to try to figure out some improvement.

            Hope this answers some of your concerns,

            Pam

            misskatyoak <misskatyoak@...> wrote:
            hi there my name is katherine, i am 20 and i have arthrogryposis. i
            dont really know much about it cause its never really affected me
            that much. thats kinda why i am on here. i have had 4 surgeries due
            to the arthrogryposis. twice on my hands when they took skin from my
            side and put in on the inside of a few of my fingers to allow them
            to stretch. and then three times on my feet to pull them away from
            my ankles annitially and then later to straighten them out. anyway
            my point is, that even though i have had these things its never
            really affected me in any sort of way. i can function fully on my
            own. only when i had the casts from the surgeries did i need a
            walker or crutches. the doctors always told me that i had one of the
            mildest cases they had ever seen. i went to a hospital in seattle
            when i was like 13 and they told me there were a few things they
            could try but there really wasnt any point because i didnt have it
            bad enough. there is a distant second cousin of mine that also has
            arhrogryposis but she has it much worse. she can barly move her arms
            and she needs help with everything. i guess the reason i am on this
            is to ask if anyone else has a mild case because everywhere i go it
            seems that people have to have help with most things to braces or
            other such things. arthrogryposis hasnt really done anything, i like
            how it makes my fingers a little funny looking. the scoliosis is the
            thing that affected me the most. i had to have a metal rod but in my
            back when i was 13. its ok now but thats the biggest thing i had to
            deal with. anyway, if anyone has anything to say i would love to
            hear from you. i know there are probably lots of spelling errors,
            sorry.






            ---------------------------------
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          • DANIEL S
            hi im daniel from oregon that did the same to me took skinfn from my leg grafted to my hands thay have cut my akeleys tendence now i can work i suffer from
            Message 5 of 5 , Jun 25, 2007
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              hi im daniel from oregon that did the same to me took skinfn from my leg grafted to my hands thay have cut my akeleys tendence now i can work i suffer from depression now that i dont work i have had 15 surgerys so far all my tendence were to shoert but i had my surgeys when i was 4 tell i was 16 years of age and suffer from panic atack ptsd over all this im glad you are doing well

              pam sears <pm_sears@...> wrote: Hi Katherine, Im 48 and am a very mild case as well. Ive lived a very normal life with no surgeries. my parents learned there lesson on my brother who had many that were never very successful. I have one son who has it mild too and two other kids that dont have it all. Now in my later years i am having some respitory problems that they have decided is from the artro. A very wise Dr. sent me to a geneticist, which are hard to come by with much knowledge on AMC and had me get in a genetic study. After some research told me i have DA5 distal arthrogryposis 5. They told me saying you have AMC is too broad that it has 12 different types and mine is DA5 has to do with stiffness in eye movement and pulmonary too, along with all the other stiff joints. I am pretty much affected everywhere just not very severe. most people just notice i cant walk flat footed and my fingers dont go straight nor can i make a fist.
              When i read the stories of most of the others I feel like i dont really fit in as most are so much more severe.Im just trying to find others with pulmonary problems to try to figure out some improvement.

              Hope this answers some of your concerns,

              Pam

              misskatyoak <misskatyoak@...> wrote:
              hi there my name is katherine, i am 20 and i have arthrogryposis. i
              dont really know much about it cause its never really affected me
              that much. thats kinda why i am on here. i have had 4 surgeries due
              to the arthrogryposis. twice on my hands when they took skin from my
              side and put in on the inside of a few of my fingers to allow them
              to stretch. and then three times on my feet to pull them away from
              my ankles annitially and then later to straighten them out. anyway
              my point is, that even though i have had these things its never
              really affected me in any sort of way. i can function fully on my
              own. only when i had the casts from the surgeries did i need a
              walker or crutches. the doctors always told me that i had one of the
              mildest cases they had ever seen. i went to a hospital in seattle
              when i was like 13 and they told me there were a few things they
              could try but there really wasnt any point because i didnt have it
              bad enough. there is a distant second cousin of mine that also has
              arhrogryposis but she has it much worse. she can barly move her arms
              and she needs help with everything. i guess the reason i am on this
              is to ask if anyone else has a mild case because everywhere i go it
              seems that people have to have help with most things to braces or
              other such things. arthrogryposis hasnt really done anything, i like
              how it makes my fingers a little funny looking. the scoliosis is the
              thing that affected me the most. i had to have a metal rod but in my
              back when i was 13. its ok now but thats the biggest thing i had to
              deal with. anyway, if anyone has anything to say i would love to
              hear from you. i know there are probably lots of spelling errors,
              sorry.

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