Tell me about how Arthrogryposis affects you

Sarah - posted on 02/25/2010 ( 8 moms have responded )

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Hello, my name is Sarah and I have AMC. That sounded much more like an AA intro than I intended. :) I am 26 and was diagnosed with Arthrogryposis at birth... Actually, they diagnosed me with a bunch of stuff because they had no idea what they were looking at. God bless doctors... they try. Anyway, it only affects my arms and shoulders and I have managed to adapt well enough to lead a pretty normal life. I drive a car, am a college student, have a house, husband, baby, etc. I know AMC is sort of a catch-all diagnosis and affects any number of limbs, bones and organs. I would like to hear how you or your loved one is affected, and to what extent.

Keep on keepin' on!
Sarah

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Kasey - posted on 08/24/2013

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Hello Sarah, My name is Kasey and I was diagnosed with AMC at birth. I am now pregnant with my first child and trying to figure out how I'm going to do this as i have limited use of my arms. After I read that you have a child I would really love to pick your brain about how you function in everyday life with your child. If you could please email me that would be great. I would love to hear your story. Thanks so much! krthermes@hotmail.com

Kasey - posted on 08/24/2013

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Hello Sarah, My name is Kasey and I was diagnosed with AMC at birth. I am now pregnant with my first child and trying to figure out how I'm going to do this as i have limited use of my arms. After I read that you have a child I would really love to pick your brain about how you function in everyday life with your child. If you could please email me that would be great. I would love to hear your story. Thanks so much! krthermes@hotmail.com

Jane - posted on 03/26/2010

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HI, Thank you for your reply, your story is very intresting as we have been told it is not Hereditery at all, Being a very big family on both side nobody else has been affected Kirsty had a club foot and a rocker foot at birth, luckly no op's have been done, just a alot of Pysio. Her hands were badly affected at birth but also with Pysio much better.

Jane - posted on 03/26/2010

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Thank you Sarah, Yes god bless the doctors here they are trying to help me and my daughter Kirsten,they are reinvestigating her case again as it does not see to be a clear cut case of AMC, my biggest worry is no speech and her back is curving and still being in nappies age 13, alot is being investigated so I will keep you in touch.
We are very blessed with her as she is a very happy content with herself.
Keep in touch
Jane

Melissa - posted on 03/25/2010

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Hi, I have 6 yr old daughter that was born with severe bi-lat club feet, just like I was. When we took her to the pediatric ortho at 6days old he took one look at her and said she has Arthrogryposis and that is what caused the the club feet & she has it in her hands. I told him I was born with club-feet and he looked at me and said yes, and you have it in your hands too. Then I described my fathers hands to him. So guess what my daughter is a third generation.
It was nice to finally learn that there was a reason for it. I did all the research while I was pregnant and club-foot is not passed on, so I was very surprised when she was born that way. But several surgeris later, and at age 6 if you weren't looking it, you would never know it was there.
I know we are blessed that ours is not as severe as others, but it does make me nervous about future children of mine and hers.
Melissa

Jane - posted on 03/18/2010

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Thank you for your response, Kirsten has been affected quite a lot and like you the doctors had no idea at all when she was born, her feet, hands and mouth had been affected, but luckily she is able to walk, the main problem we have is speech and she is in nappies still. She was born in SA upon arriving in England the doctors are now saying it is not just AMC so we are having more tests done.

Tamatha - posted on 02/25/2010

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Hello Sarah. My name is Tamatha. My daughter Amaya is 2 yrs old and was born w AMC. She also had bilateral clubfeet and Spontaneous Hip Disclocation. AMC affects her arms, shoulders, and legs. She started therapy when she was 2 weeks old. Her drs werent sure if she would walk and it she did whe would be walking with a walker. She started walking at 18 months w a walker. But now she doesnt need it. Thank goodness. She is a little slow at learning things but she learns to do them in her own way. Which is a fight with her therapists. lol But i do believe that she will have a pretty normal life also. Thank you for sharing your story. AMC is still kinda new to my family so i like to read how it affect others and how they live with it.



Amayas momma,

Tamatha

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