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  • jmcgreevy78
    Hi, my name is Janine and I have 9 members who were born with arthrogryosis type5. My son Sean aged nine is third generation. We live in New Zealand and have
    Message 1 of 4 , Mar 4, 2008
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      Hi, my name is Janine and I have 9 members who were born with
      arthrogryosis type5. My son Sean aged nine is third generation. We live
      in New Zealand and have been under investigation for our rare condition
      by the hospitals here to learn more about how it affects us etc. While
      all 9 members of the family have it we are all different. It have
      affected our hands, feet, restricted joint movement and muscles or
      nerves in the eyes. The only major disability it causes is that my son
      walks on his toes. The doctors and specialists believe the arcillies
      tendon is tight or short in both legs. They have operated once 2 years
      ago but now he is back up on his toes. He wears AFOs Leg braces but as
      he grows he seems to be getting worse again. The specialist is trying
      to find a simlar case before he operates again. Sean is able to walk
      short distances after the first operation but now he is not able to
      keep up with other children his own age as he gets back ache and sore
      legs. The specialist is putting him back in plaster casts soon to give
      him an intensive stetch before making new AFOs for his legs. If there
      is anyone with a simlar case out there, ie toe walking caused by this
      condition could you tell me how things went for you and what was done
      etc. Thank you Janine
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