Hey there,
I just wanted to let you know that this site is amazing! I am a 31 year old from Maine to has been living with arthrogryposis since birth. The support means so much, and please feel free to ask should you have any questions.
Thanks again,
Jenn
Jenn,
Thanks for posting. I would love to talk to you a bit more. It makes me so happy to find new adults and share stories. Plus I think it is very important for younger kids with AMC to see adults living a happy life. I will email you with some of my questions. Always wanted to visit Maine..Think I may have to add to my roadtrip log.
Peg
I am a 31yr old female from Minnesota living with AMC.. I have 3 kids of my own and married 10 years. I would also like to offer any support or questions I may answer. It’s great to find others living with AMC and know how they are coping and dealing with it.
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!
Hi jeanni my names catlin Im also 18 with a child that was born with arthrogryposis we are goin through the same struggles as you and everyone else that is affected and who has a child born with arthrogryposis. If you ever wanna talk you can email me anytime!
It’s been quite some time since I’ve spoken to you, I’m so glad to see the documentary coming along so well. Just a recap of me, I’m 36 & have living with Arthrogryposis since birth. I’d love to still assist in any way I can.
Dave,
I keep thinking of you. Actually may have good news. I will be in Arizona hopefully later this year. I would love to meet up with you. I can email details as soon as I have them. Will also email where exactly I will be in AZ. Can’t wait to meet up.
Peg
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!
Im Caitriona, 22, from Northern Ireland. I’ve been living with Arthrogryposis since birth. I do live a mobile and full life but like everyone some days I just wish I was normal!! I would be happy to answer any questions you may have and if possible speak to someone with Arthrogryposis at a similar age and find out how they overcome daily tasks life throws at them!
Caitriona, so glad to hear from you. I have a lot of questions for you and plenty of other friends in you age group. I will email you privately with more details. Thanks for reading and supporting my passion project.
Peg
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!!!
Hi, im a single mom with two children. My son is 13 and my daughter is almost 5. I found out she was going to have Arthrogryposis since I was about 4 1/2 months pregent with her. Let me tell you, she is my lil angel. She is stubborn and determind and such a bright little girl. Shes had mutiple surgeries and gets either pt or ot 5 days a week at school. she goes to pre school about 2 1/2 hours a day and she wears afo braces and shoe lifts durning the day. she loves to dance and sing and can now feed herself even soup!! which I dont do all the well because im a slob lol shes tries to ride her brothers skateboard (which scares me to no end) and refuses to believe she “cant” do anything….thats basicly how we live our lives is there is nothing shes cant do. The only thing that bothers me is we get stares sometimes and people being “extra” nice to her in a obvous way. we does answer questions about her muscles in this way “ITS JUST HOW IM MADE OK” lol did i mention she was spunky? lol we are struggling to find a playmate who also has arthrogryposis, as she has a lot of friends but Im sure would benefit from someone with the condition also.
I am a 22-yr old female who was born w/ AMC. It affects my upper and lower extremities. But it is not getting in my way for a life of independence. I currently live w/ my boyfriend, am holding a great job, and will be continuing school in the Spring. If you have any questions for me, please do not hesitate to contact me.
I love seeing all these people that affected by arthrogryposis talking about living full happy lives it’s very moving. My daughter is 7 months old and was born with arthrogryposis and everyone on here gives me so much hope that she will also. Even though her case isn’t bad it’s still so hard for me to know she’s going to obstacles in her life that most people wont have. She was also born with gastroschisis and it’s a miracle she’s even here so she’s already prove to me that she is a fighter and no matter obstacle is put in front of her she will do it to her fullest ability! I would love to talk anyone who is affected or has a baby that is affected with arthrogryposis. I have tons of questions!
i just want to say this is a wonderful site. i am a 22 yr old mom to a 2 yr old little boy and 2 month old twin boys of which the youngest has arthrogryposis. the twins were born 6 weeks premature. Matthew,(AMC) was born with left foot clubbed, right knee hyperextended, and contractures in the left knee and left elbow. i am slowly learning more about this. Matthew is a miracle. all three of my boys are. they are all amazing. thank you so much for doing what you are doing. please keep on. it is very refreshing and comforting to read other peoples stories with this condition.
Katie,
Thanks for commenting. Congratulations on your twins! I also have 3 boys and the older two are fiercely protective of Owen. They have been around so many families and people with arthrogryposis that they started to think everyone has it. Having Owen as a brother has made them so much more compassionate to others. Have you ever visited our support group: http://www.amcsupport.org? There are also a large group of us on Facebook along with individual groups. Please feel free to find me (margaret raye chaidez)
found this site looking for more info for my 11 year old son. He was born with arthrogryposis amyoplasia. We cannot seem to find info or support groups in this area, IA. Please let us/him know if there is a website for us to get or give info and give testimonials for diff docs and hospitals. Thank you.
Ann, we are in Chicago and actually we do have AMCers in Iowa. Have you logged onto our support group at: http://www.amcsupport.org? We have forums/message boards on everything from therapy to parenting to misc. arthrogryposis topics. This has been my lifeline whenever I have questions about Owen. Also we have a number of groups on Facebook. If you are on Facebook, you can look for me (margaret raye chaidez) and I can connect you with other families. We also have our annual convention coming up in July in Kansas City, Mo. I would love to ask you some questions as well. My son Owen is 4 with amyoplasia and affected in all four limbs. Glad you found the site. Please do visit the support group and look for us on Facebook.
I just found this website and it is awesome, my daughter Maria was born with AMC and I wouldnt change a thing about her. She is my life . She is going to be 3 months and she is a fighter. We are currently at RMH, while she is being seen at Shriners Hospital Spokane. Thank you for whoever made this website.
My daughter was born with both knees hyperextended, it affected both feet, her neck, elbow and wrists along with her fingers. she has been a real trooper with all her PT/OT. I am glad that I found this website. I would like to learn more about conferences and gatherings with other parents and people that have AMC. I think that it would help my family out alot. Thank you again Jennifer & Maria Carter
Have you logged onto our support group at: http://www.amcsupport.org? We have forums/message boards on everything from therapy to parenting to misc. arthrogryposis topics. This has been my lifeline whenever I have questions about Owen. Also we have a number of groups on Facebook. If you are on Facebook, you can look for me (margaret raye chaidez) and I can connect you with other families. We also have our annual convention coming up in July in Kansas City, Mo. I would love to ask you some questions as well. My son Owen is 4 with amyoplasia and affected in all four limbs. Glad you found the site. Please do visit the support group and look for us on Facebook.
So glad to hear from you. It always amazes me there are so many AMC families. Four years ago, I never heard of the condition and now I can’t believe I never heard or knew someone with it before.
Hello there. Our son is due in about two weeks and they suspect that he has Arthrogryposis. My wife and i are extrememly excited for him to get here and we have read everything that we can on the subject. What is the best website or resource to learn more about other peoples stories and etc. What is a good support group?
Thank you
Zach
I love the website you have going and am interested to watch your documentary! I am a 23 year old living with Arthrogryposis. I lead a very normal life, I teach first grade and am getting married in the fall. I have never known anyone who also had Arthrogryposis- but love reading stories about others, it is so empowering! Thank you for all the effort you have put forth in spreading awareness about Arthrogryposis!
Hi I really enjoy your site it good to see such a positive site. I am a 41 year woman from New Zealand. I have AMC, it effects all my limbs. I have been married for nearly 16 years to a fab man named Adrian. We have two beautiful children. They were both born full term by C-section. I am social worker and I work part time in the health sector. It is refreshing to see a site that does not focus solely on surgery for AMC children. There is so much more to us both as children and adults.
Hi,
My name is ecklecia morris and I have a daughter with arthrogryposis. Her name is Makajah and she is about to be 10 months old. They originally have her 2moro days to live do to alot of other issues. She was also diagnosed with hyper extension of her neck, clubbed feet, abnormal brain and bilateral vocal cord paralysis. She also has a trach and a g-tube. Even through all this she is a very strong and blessed child. It gets a little hard not to hear her cry out make a sound, but I can tell what she needs by her breathing. She was 4 lbs 3 oz at birth. She is still trying to learn to smile and she tries to move some of her body parts. She is a very smart child. As of now her brain results came out that she is only one month behind her actual age. I was wondering if it was possible for her to be happy and one day married and I read about some who had and I wish that for her.
Ecklecia, welcome to our family. Makajah will grow up to live a healthy happy lives. Many of my friends with arthrogryposis are married, some have children and all are working in careers like professional breakdancer, motivational speaker, teacher, computer engineer, writer, graphic design and more. My son Owen is 5 and affected in all four limbs. The doctors initially told us Owen wouldn’t move his arms or walk. Today he feeds himself and is learning to walk with a walker. The best part of our journey is being part of the AMC Support family. I would have been lost without the support group. Have you visited the site? http://www.amcsupport.org. There are also many of us on Facebook (feel free to friend me Margaret Chaidez). Makajah will learn to do things in her own way, her own style. The one thing I have learned about my son and others with his condition, they are determined and very smart. Please feel free to ask any questions. Again, welcome to our family.
Thanks margaret, what a wonderful welcome. I am pleased to heart about others who are doing wonderful things even with this diagnosis. It keeps my hopes up and yes she is very smart. No I haven’t visited the website, but thanks to you I will. I will see you on fb. Thanks again! God bless you and the people who created this site.
Nicholas, thanks for commenting. I would love to hear more about your story and happy to answer any questions. Please be sure to visit http://www.amcsupport.org, our support group site. There are also a number of AMC support groups on Facebook. There are many families and individuals available to answer any questions. I will email you separately to provide some additional contact information.
I am 26 years old and have Arthrogryposis. I’m affected in my elbows and and wrist. I’m currently in college working on a second Bachelors in Family and Child Studies with a concentration in Child Life. I’m taking a class on childhood diseases and disorders and we have to present a disease or disorder that affects children. Being a person born with a cogenital condition I decided why not share my conditon with the class. I never really knew much about Arthrogryopsis only that in my case during my mother’s pregnancy there was a lack of amniotic fluid and I barely moved and that Arthrgryposis can occur in 1in 3000 births and varies from person to person. Since I’ve been researching I’ve been amazed at out many people are actually affected by it. Because this being a rare condition I never seen anybody in person with the conditon except for a babysitter I had when I too young to remember. I watched the video clip sweetest gift: living with Arthrogryposis and feel the same as most of the people who made comments. I’ve even had people assume that I have Cerebral Palsy. I’m like no! I don’t have that! As the saying goes when you assume you make an ass out of u and not me. LOL
Good to meet you. I think it is a great idea to share with your class. I am finding so many people with AMC and I suppose it is because I have a personal connection. The more we can promote awareness, the more families we can help. The oldest living person with AMC I have met is 80 years and has led an amazing life. I would love to talk to you more and learn about how you are affected. I will email you separately. Also if you haven’t visited our support group site, http://www.amcsupport.org please go and visit. You can also find plenty of us online at Facebook and Google + and Twitter.
Just wanted to mention that we launched an electronic growth charts application at MyGrowthCharts.com, that has charts specific for Amyoplasia, it is free to register for families and you can share the chart with family members and physicians. Kind Regards.
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Hey there,
I just wanted to let you know that this site is amazing! I am a 31 year old from Maine to has been living with arthrogryposis since birth. The support means so much, and please feel free to ask should you have any questions.
Thanks again,
Jenn
Jenn,
Thanks for posting. I would love to talk to you a bit more. It makes me so happy to find new adults and share stories. Plus I think it is very important for younger kids with AMC to see adults living a happy life. I will email you with some of my questions. Always wanted to visit Maine..Think I may have to add to my roadtrip log.
Peg
I am a 31yr old female from Minnesota living with AMC.. I have 3 kids of my own and married 10 years. I would also like to offer any support or questions I may answer. It’s great to find others living with AMC and know how they are coping and dealing with it.
Thanks Amanda
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!
Hi jeanni my names catlin Im also 18 with a child that was born with arthrogryposis we are goin through the same struggles as you and everyone else that is affected and who has a child born with arthrogryposis. If you ever wanna talk you can email me anytime!
Hello again from Phoenix,
It’s been quite some time since I’ve spoken to you, I’m so glad to see the documentary coming along so well. Just a recap of me, I’m 36 & have living with Arthrogryposis since birth. I’d love to still assist in any way I can.
Thanks,
Dave
Dave,
I keep thinking of you. Actually may have good news. I will be in Arizona hopefully later this year. I would love to meet up with you. I can email details as soon as I have them. Will also email where exactly I will be in AZ. Can’t wait to meet up.
Peg
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!
Hi there,
Im Caitriona, 22, from Northern Ireland. I’ve been living with Arthrogryposis since birth. I do live a mobile and full life but like everyone some days I just wish I was normal!! I would be happy to answer any questions you may have and if possible speak to someone with Arthrogryposis at a similar age and find out how they overcome daily tasks life throws at them!
Caitriona, so glad to hear from you. I have a lot of questions for you and plenty of other friends in you age group. I will email you privately with more details. Thanks for reading and supporting my passion project.
Peg
My name is Jeanni and i am eighteen years old,my son Graysen is eight weeks old and we found out a few days after he was born that he has arthrogryposis,more specifically amyoplasia, i’m hoping and pray my son can live a normal independent life, at this point in time most of his joints are stiff and he has so little muscle in his arms they aren’t quite moving yet,i was wondering what symptoms you were born with and what the outcome has been after treatments and surgery’s and such,what limitations do you have and wait activities are difficult for you to engage in because of you arthrogryposis?
id really love the opportunity to chat with you about this it would really be nice to chat with someone who understands arthrogryposis even better then i do! thanks for y our time,hope to hear from you!!!
Hi, im a single mom with two children. My son is 13 and my daughter is almost 5. I found out she was going to have Arthrogryposis since I was about 4 1/2 months pregent with her. Let me tell you, she is my lil angel. She is stubborn and determind and such a bright little girl. Shes had mutiple surgeries and gets either pt or ot 5 days a week at school. she goes to pre school about 2 1/2 hours a day and she wears afo braces and shoe lifts durning the day. she loves to dance and sing and can now feed herself even soup!! which I dont do all the well because im a slob lol shes tries to ride her brothers skateboard (which scares me to no end) and refuses to believe she “cant” do anything….thats basicly how we live our lives is there is nothing shes cant do. The only thing that bothers me is we get stares sometimes and people being “extra” nice to her in a obvous way. we does answer questions about her muscles in this way “ITS JUST HOW IM MADE OK” lol did i mention she was spunky? lol we are struggling to find a playmate who also has arthrogryposis, as she has a lot of friends but Im sure would benefit from someone with the condition also.
Hi,
I am a 22-yr old female who was born w/ AMC. It affects my upper and lower extremities. But it is not getting in my way for a life of independence. I currently live w/ my boyfriend, am holding a great job, and will be continuing school in the Spring. If you have any questions for me, please do not hesitate to contact me.
Thank you for your website.
-Sukie
I love seeing all these people that affected by arthrogryposis talking about living full happy lives it’s very moving. My daughter is 7 months old and was born with arthrogryposis and everyone on here gives me so much hope that she will also. Even though her case isn’t bad it’s still so hard for me to know she’s going to obstacles in her life that most people wont have. She was also born with gastroschisis and it’s a miracle she’s even here so she’s already prove to me that she is a fighter and no matter obstacle is put in front of her she will do it to her fullest ability! I would love to talk anyone who is affected or has a baby that is affected with arthrogryposis. I have tons of questions!
i just want to say this is a wonderful site. i am a 22 yr old mom to a 2 yr old little boy and 2 month old twin boys of which the youngest has arthrogryposis. the twins were born 6 weeks premature. Matthew,(AMC) was born with left foot clubbed, right knee hyperextended, and contractures in the left knee and left elbow. i am slowly learning more about this. Matthew is a miracle. all three of my boys are. they are all amazing. thank you so much for doing what you are doing. please keep on. it is very refreshing and comforting to read other peoples stories with this condition.
Katie,
Thanks for commenting. Congratulations on your twins! I also have 3 boys and the older two are fiercely protective of Owen. They have been around so many families and people with arthrogryposis that they started to think everyone has it. Having Owen as a brother has made them so much more compassionate to others. Have you ever visited our support group: http://www.amcsupport.org? There are also a large group of us on Facebook along with individual groups. Please feel free to find me (margaret raye chaidez)
found this site looking for more info for my 11 year old son. He was born with arthrogryposis amyoplasia. We cannot seem to find info or support groups in this area, IA. Please let us/him know if there is a website for us to get or give info and give testimonials for diff docs and hospitals. Thank you.
Ann, we are in Chicago and actually we do have AMCers in Iowa. Have you logged onto our support group at: http://www.amcsupport.org? We have forums/message boards on everything from therapy to parenting to misc. arthrogryposis topics. This has been my lifeline whenever I have questions about Owen. Also we have a number of groups on Facebook. If you are on Facebook, you can look for me (margaret raye chaidez) and I can connect you with other families. We also have our annual convention coming up in July in Kansas City, Mo. I would love to ask you some questions as well. My son Owen is 4 with amyoplasia and affected in all four limbs. Glad you found the site. Please do visit the support group and look for us on Facebook.
I just found this website and it is awesome, my daughter Maria was born with AMC and I wouldnt change a thing about her. She is my life . She is going to be 3 months and she is a fighter. We are currently at RMH, while she is being seen at Shriners Hospital Spokane. Thank you for whoever made this website.
My daughter was born with both knees hyperextended, it affected both feet, her neck, elbow and wrists along with her fingers. she has been a real trooper with all her PT/OT. I am glad that I found this website. I would like to learn more about conferences and gatherings with other parents and people that have AMC. I think that it would help my family out alot. Thank you again Jennifer & Maria Carter
Have you logged onto our support group at: http://www.amcsupport.org? We have forums/message boards on everything from therapy to parenting to misc. arthrogryposis topics. This has been my lifeline whenever I have questions about Owen. Also we have a number of groups on Facebook. If you are on Facebook, you can look for me (margaret raye chaidez) and I can connect you with other families. We also have our annual convention coming up in July in Kansas City, Mo. I would love to ask you some questions as well. My son Owen is 4 with amyoplasia and affected in all four limbs. Glad you found the site. Please do visit the support group and look for us on Facebook.
So glad to hear from you. It always amazes me there are so many AMC families. Four years ago, I never heard of the condition and now I can’t believe I never heard or knew someone with it before.
Hello there. Our son is due in about two weeks and they suspect that he has Arthrogryposis. My wife and i are extrememly excited for him to get here and we have read everything that we can on the subject. What is the best website or resource to learn more about other peoples stories and etc. What is a good support group?
Thank you
Zach
Hi there,
I love the website you have going and am interested to watch your documentary! I am a 23 year old living with Arthrogryposis. I lead a very normal life, I teach first grade and am getting married in the fall. I have never known anyone who also had Arthrogryposis- but love reading stories about others, it is so empowering! Thank you for all the effort you have put forth in spreading awareness about Arthrogryposis!
Kelly
Hi I really enjoy your site it good to see such a positive site. I am a 41 year woman from New Zealand. I have AMC, it effects all my limbs. I have been married for nearly 16 years to a fab man named Adrian. We have two beautiful children. They were both born full term by C-section. I am social worker and I work part time in the health sector. It is refreshing to see a site that does not focus solely on surgery for AMC children. There is so much more to us both as children and adults.
Regards
Rose
Hi,
My name is ecklecia morris and I have a daughter with arthrogryposis. Her name is Makajah and she is about to be 10 months old. They originally have her 2moro days to live do to alot of other issues. She was also diagnosed with hyper extension of her neck, clubbed feet, abnormal brain and bilateral vocal cord paralysis. She also has a trach and a g-tube. Even through all this she is a very strong and blessed child. It gets a little hard not to hear her cry out make a sound, but I can tell what she needs by her breathing. She was 4 lbs 3 oz at birth. She is still trying to learn to smile and she tries to move some of her body parts. She is a very smart child. As of now her brain results came out that she is only one month behind her actual age. I was wondering if it was possible for her to be happy and one day married and I read about some who had and I wish that for her.
Ecklecia, welcome to our family. Makajah will grow up to live a healthy happy lives. Many of my friends with arthrogryposis are married, some have children and all are working in careers like professional breakdancer, motivational speaker, teacher, computer engineer, writer, graphic design and more. My son Owen is 5 and affected in all four limbs. The doctors initially told us Owen wouldn’t move his arms or walk. Today he feeds himself and is learning to walk with a walker. The best part of our journey is being part of the AMC Support family. I would have been lost without the support group. Have you visited the site? http://www.amcsupport.org. There are also many of us on Facebook (feel free to friend me Margaret Chaidez). Makajah will learn to do things in her own way, her own style. The one thing I have learned about my son and others with his condition, they are determined and very smart. Please feel free to ask any questions. Again, welcome to our family.
Thanks margaret, what a wonderful welcome. I am pleased to heart about others who are doing wonderful things even with this diagnosis. It keeps my hopes up and yes she is very smart. No I haven’t visited the website, but thanks to you I will. I will see you on fb. Thanks again! God bless you and the people who created this site.
I am 24 and I was born with arthogryposis from head to toe. If someone would please email me I have alot of questions to ask.
Nicholas, thanks for commenting. I would love to hear more about your story and happy to answer any questions. Please be sure to visit http://www.amcsupport.org, our support group site. There are also a number of AMC support groups on Facebook. There are many families and individuals available to answer any questions. I will email you separately to provide some additional contact information.
I am 26 years old and have Arthrogryposis. I’m affected in my elbows and and wrist. I’m currently in college working on a second Bachelors in Family and Child Studies with a concentration in Child Life. I’m taking a class on childhood diseases and disorders and we have to present a disease or disorder that affects children. Being a person born with a cogenital condition I decided why not share my conditon with the class. I never really knew much about Arthrogryopsis only that in my case during my mother’s pregnancy there was a lack of amniotic fluid and I barely moved and that Arthrgryposis can occur in 1in 3000 births and varies from person to person. Since I’ve been researching I’ve been amazed at out many people are actually affected by it. Because this being a rare condition I never seen anybody in person with the conditon except for a babysitter I had when I too young to remember. I watched the video clip sweetest gift: living with Arthrogryposis and feel the same as most of the people who made comments. I’ve even had people assume that I have Cerebral Palsy. I’m like no! I don’t have that! As the saying goes when you assume you make an ass out of u and not me. LOL
Good to meet you. I think it is a great idea to share with your class. I am finding so many people with AMC and I suppose it is because I have a personal connection. The more we can promote awareness, the more families we can help. The oldest living person with AMC I have met is 80 years and has led an amazing life. I would love to talk to you more and learn about how you are affected. I will email you separately. Also if you haven’t visited our support group site, http://www.amcsupport.org please go and visit. You can also find plenty of us online at Facebook and Google + and Twitter.
That is some GREAT information. I am very impressed and can’t wait for more like it.
Just wanted to mention that we launched an electronic growth charts application at MyGrowthCharts.com, that has charts specific for Amyoplasia, it is free to register for families and you can share the chart with family members and physicians. Kind Regards.