I would start by talking to whoever made the brace for you, they should be able
to either fix it themselves or refer you to someone who can do the repair. If
that does not work you can look for an orthotics specialist in your area. They
can do any repairs your brace might need, and even construct a new one when the
time comes. Where are you from, by the way? I know of someone excellent in
Northern California.
-Lauren

--- In amc_adults@yahoogroups.com, "Ilyce" <ictreger@...> wrote:
>
> Friends,
>
> I'm having a problem with my leg brace and need to have the wire replaced. Do
you know a resource out there who could help? One wire has broken but the others
are fine. Thanks.
>
>
> Ilyce
>

Friends,

I'm having a problem with my leg brace and need to have the wire replaced. Do
you know a resource out there who could help? One wire has broken but the others
are fine. Thanks.


Ilyce

Hi there!
 
My name is Morne. I'm 34, born with AMC, and I live in South Africa. Any
questions about AMC? Drop me a line.....
 
Regards
Morne

--- On Sun, 11/22/09, Dimitra Giannopoulou <dimitra@...> wrote:


From: Dimitra Giannopoulou <dimitra@...>
Subject: [Adults AMC] What is going on?
To: "'Adults_With_Arthrogryposis'" <Adults_With_Arthrogryposis@yahoogroups.com>,
"'amc_adults'" <amc_adults@yahoogroups.com>, "'ArthrogryposisSupport'"
<ArthrogryposisSupport@yahoogroups.com>, "'arthrogryposissupportgroup'"
<arthrogryposissupportgroup@yahoogroups.com>, "'Avenues'"
<Avenues@yahoogroups.com>, "'avenues2'" <avenues2@yahoogroups.com>
Date: Sunday, November 22, 2009, 8:50 PM


 



Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra

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











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

Hi I am Neal Goldsmith. How do I find out if there is an organization (AMC) in
the Calgary area here in Canada.




________________________________
From: Brenda <beekayn@...>
To: amc_adults@yahoogroups.com
Sent: Sun, November 22, 2009 2:13:34 PM
Subject: Re: [Adults AMC] What is going on?

 
Hi Dimitra-  Yes it has been very quiet... But I'm still here if anyone needs
someone to talk to, other AMC'ers, or moms and dads with affected Children. 
Am 33 years old, live indepently and was born with AMC.  I live in the United
States, in Utah. 
 
Brenda
 

--- On Sun, 11/22/09, Dimitra Giannopoulou <dimitra@gemdome. gr> wrote:

From: Dimitra Giannopoulou <dimitra@gemdome. gr>
Subject: [Adults AMC] What is going on?
To: "'Adults_With_ Arthrogryposis' " <Adults_With_ Arthrogryposis@ yahoogroups.
com>, "'amc_adults' " <amc_adults@yahoogro ups.com>, "'ArthrogryposisSup port'"
<ArthrogryposisSuppo rt@yahoogroups. com>, "'arthrogryposissup portgroup' "
<arthrogryposissuppo rtgroup@yahoogro ups.com>, "'Avenues'" <Avenues@yahoogroups
.com>, "'avenues2'" <avenues2@yahoogroup s.com>
Date: Sunday, November 22, 2009, 11:50 AM

 

Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra

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

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





       __________________________________________________________________
The new Internet Explorer® 8 - Faster, safer, easier.  Optimized for Yahoo! 
Get it Now for Free! at http://downloads.yahoo.com/ca/internetexplorer/

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

Hi Dimitra-  Yes it has been very quiet... But I'm still here if anyone needs
someone to talk to, other AMC'ers, or moms and dads with affected Children. 
Am 33 years old, live indepently and was born with AMC.  I live in the United
States, in Utah. 
 
Brenda
 


--- On Sun, 11/22/09, Dimitra Giannopoulou <dimitra@...> wrote:


From: Dimitra Giannopoulou <dimitra@...>
Subject: [Adults AMC] What is going on?
To: "'Adults_With_Arthrogryposis'" <Adults_With_Arthrogryposis@yahoogroups.com>,
"'amc_adults'" <amc_adults@yahoogroups.com>, "'ArthrogryposisSupport'"
<ArthrogryposisSupport@yahoogroups.com>, "'arthrogryposissupportgroup'"
<arthrogryposissupportgroup@yahoogroups.com>, "'Avenues'"
<Avenues@yahoogroups.com>, "'avenues2'" <avenues2@yahoogroups.com>
Date: Sunday, November 22, 2009, 11:50 AM


 



Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra

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











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

Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra



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

Anyone looking to work from home should check this website out:
http://www.procardinternational.com/GregC1301.  It is great way to make extra
money.  Being disabled and working for someone else on their schedule is next to
impossible for me.  I'll admit; when I started I was a bit skeptical.  I thought
a 'Work From Home' job that was legit, yeah right.  Then I remembered; there are
'NO' fees or 'Start-up Costs' of any kind.  I researched the options available
and I was hooked.  These jobs are flex-time.  You work when 'YOU' want. This is
not a MLM or a 'Get Rich Quick' scheme.  It is a legitimate job option and the
PERFECT career for me.

Yes, true Theresa.., but you cannot vote!  Voting is very important!  So I
still encourage those who are not members yet to become a paid member now,
so that you may participate in the voting process that is occurring in this
important time in the history of AMCSI.  If you are already a member, please
take this time to vote!  Thanks!



:-)



Chris Johnson



   _____

From: Adults_With_Arthrogryposis@yahoogroups.com
[mailto:Adults_With_Arthrogryposis@yahoogroups.com] On Behalf Of Theresa
Lucas
Sent: Thursday, October 22, 2009 7:37 PM
To: Adults_With_Arthrogryposis@yahoogroups.com; Avenues2@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
amc_adults@yahoogroups.com
Subject: Re: [Adults w/ AMC] AMCSI Membership






THANKS Chris!

Just to let everyone know, AMCSI's membership dues runs yearly from Jan-Dec.
We do not pro rate dues.

Also, You still can attend convention & join our forums (
http://www.amcsuppo <http://www.amcsupport.org/forum> rt.org/forum ) for
free without being a paid member!

~Theresa Lucas
http://www.theresal <http://www.theresalucas.com> ucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsuppo <http://www.amcsupport.org> rt.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

-----Original Message-----
From: Chris Johnson <chris.johnson1@ <mailto:chris.johnson1%40comcast.net>
comcast.net>
To: Adults_With_ <mailto:Adults_With_Arthrogryposis%40yahoogroups.com>
Arthrogryposis@yahoogroups.com; Avenues2@yahoogroup
<mailto:Avenues2%40yahoogroups.com> s.com; Arthrogryposis@
<mailto:Arthrogryposis%40yahoogroups.com> yahoogroups.com;
ArthrogryposisSuppo <mailto:ArthrogryposisSupport%40yahoogroups.com>
rt@yahoogroups.com; amc_adults@yahoogro
<mailto:amc_adults%40yahoogroups.com> ups.com
Sent: Thu, Oct 22, 2009 5:27 pm
Subject: [Adults w/ AMC] AMCSI Membership

Hello Everyone:

Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!

https://www. <https://www.formspring.com/forms/?578046-azDXdQGUmr>
formspring.com/forms/?578046-azDXdQGUmr

Thank you for your time!

Chris Johnson

AMCSI Voting member.

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

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





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

THANKS Chris!

Just to let everyone know, AMCSI's membership dues runs yearly from Jan-Dec. We
do not pro rate dues.

Also, You still can attend convention & join our forums (
http://www.amcsupport.org/forum ) for free without being a paid member!



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



-----Original Message-----
From: Chris Johnson <chris.johnson1@...>
To: Adults_With_Arthrogryposis@yahoogroups.com; Avenues2@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
amc_adults@yahoogroups.com
Sent: Thu, Oct 22, 2009 5:27 pm
Subject: [Adults w/ AMC] AMCSI Membership






Hello Everyone:

Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!

https://www.formspring.com/forms/?578046-azDXdQGUmr

Thank you for your time!


Chris Johnson

AMCSI Voting member.

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







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

Hello Everyone:



Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!



https://www.formspring.com/forms/?578046-azDXdQGUmr



Thank you for your time!


Chris Johnson

AMCSI Voting member.







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

Hi Kristen,

I am 53 and had a total left hip replacement in 1990. I had 2 surgeries as a
child for severe dislocated hip. This was the best thing I ever did for myself,
it really added to my mobility and completely got rid of my hip and sciatic
pain. It was done by Dr. Goodman at Stanford Univ. Hospital.

Best of luck to you,
Kathleen
Lincoln, CA


>
> -----Original Message-----
> From: chapkristen <chapkelarson@...>
> To: amc_adults@yahoogroups.com
> Sent: Mon, Sep 21, 2009 10:25 pm
> Subject: [Adults AMC] Hip replacement?
>
>
>
>
>
>
> Hi there,
>
> I am 31 years-old, have AMC, and can walk. Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side. After a couple
of tests and visits, he is suggesting a hip replacement. Have any of you had a
similar situation? If so, how did you handle it, and what were the results?
>
> Also, does anyone know of an orthopaedic doctor in Indianapolis who
specializes in working with patients with AMC? This would help me.
>
> Thanks,
>
> Kristen
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Kristen,

a friend of mine had 2 hip replacements & a knee replaced in Indianapolis & she
also has AMC. She went to Dr Fisher

http://davidafishermd.com/aboutdrfisher/aboutdrfisher.shtml



I also live in Indiana & have AMC! Where are you from? maybe we could do lunch
sometime!


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


-----Original Message-----
From: chapkristen <chapkelarson@...>
To: amc_adults@yahoogroups.com
Sent: Mon, Sep 21, 2009 10:25 pm
Subject: [Adults AMC] Hip replacement?






Hi there,

I am 31 years-old, have AMC, and can walk. Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side. After a couple
of tests and visits, he is suggesting a hip replacement. Have any of you had a
similar situation? If so, how did you handle it, and what were the results?

Also, does anyone know of an orthopaedic doctor in Indianapolis who specializes
in working with patients with AMC? This would help me.

Thanks,

Kristen








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

Hi there,

I am 31 years-old, have AMC, and can walk.  Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side.  After a couple
of tests and visits, he is suggesting a hip replacement.  Have any of you had a
similar situation?  If so, how did you handle it, and what were the results?

Also, does anyone know of an orthopaedic doctor in Indianapolis who specializes
in working with patients with AMC?  This would help me.

Thanks,

Kristen

http://www.kare11.com/news/investigative/extras/extra_article.aspx?storyid=82456\
7&catid=26

Hi Patty,
 
Well, I think that you'd have to go to our university's website to access it. I
actually wanted to publish it. I have spoken to my promotor about it. If so,
it'll definitely be online. So, we are still looking into such possibilities. I
regard this thesis as my 'baby' because I wanted to do a thesis on AMC to find
out how it affects others who have the same condition as myself.
 
Well, it is good to know that you are independent and that AMC doesn't control
your life. I can drive as well, but I don't have a drivers' licence. The reason
for that is that I keep putting it off. Can you believe that?!! LOL!!!
 
Cheers
Morne 

--- On Fri, 9/18/09, Patty Clarke <pelclarke@...> wrote:


From: Patty Clarke <pelclarke@...>
Subject: RE: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Friday, September 18, 2009, 9:27 PM


 



HI Morne, I would love to read your thesis. I don't have masters in
Psychology but I do have a Bachelor's and I also have AMC. It affects me
pretty significantly but I am independent, work, drive etc. Is your thesis
going to be online at all?

Patty.

From: amc_adults@yahoogro ups.com [mailto:amc_adults@yahoogro ups.com] On
Behalf Of morne vanWyk
Sent: September-18- 09 7:10 AM
To: amc_adults@yahoogro ups.com
Subject: Re: [Adults AMC] New York Area Doctor

Hi Dan,

My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
in the process of finising a thesis on the social effects of arthrogryposis
on such individual (I'm studying towards a Masters degree in Research
Psychology). I live with mild arthrogryposis as well. Well, because of my
thesis, I did a lot of reading about A.M.C. Literature suggests that
arthrogryposis is not an heridetary condition. So, you can't pass it on to
your kids. The fact that your brother has a healthy little girl, bears
testimony to that. I have read a lot about other A.M.C.'ers who have healthy
children. What I'll suggest is that you read up a bit more on arthrogryposis
or contact Avenues for some info. I hope this helps.....

Good luck!

Kind regards
Morne



--- On Mon, 9/14/09, dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com>
> wrote:

From: dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com> >
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogro ups.com <mailto:amc_ adults%40yahoogr oups.com>
Date: Monday, September 14, 2009, 6:49 PM

I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
treated the symptoms of Arthrogryposis like my scoliosis and related
breathing limitations all my life and never really concentrated on seeing a
doctor for my Arthrogryposis since i was very young. Staying active and PT
was always the best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i
can get an updated diagnosis on the type I have. My wife and i are looking
to have children and want to make sure the chances are good that this is not
something i can pass to them.

I have read a lot that seems to make me think the form i have is not
something that can be passed down but my brother was born with clubbed feet
and getting an updated diagnosis is probably something good to have. My
brother did have a heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your
time. Dan

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

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



















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

Thank you for that info.

Dan Gentile
516.443.2041
Sent from my iPhone

On Sep 18, 2009, at 7:09 AM, morne vanWyk <vanwyk.morne@...>
wrote:

> Hi Dan,
>
> My name is Morne, I'm 34 and I'm writing from South Africa. I am
> currently in the process of finising a thesis on the social effects
> of arthrogryposis on such individual (I'm studying towards a Masters
> degree in Research Psychology). I live with mild arthrogryposis as
> well. Well, because of my thesis, I did a lot of reading about
> A.M.C. Literature suggests that arthrogryposis is not an heridetary
> condition. So, you can't pass it on to your kids. The fact that your
> brother has a healthy little girl, bears testimony to that. I have
> read a lot about other A.M.C.'ers who have healthy children. What
> I'll suggest is that you read up a bit more on arthrogryposis or
> contact Avenues for some info. I hope this helps.....
>
> Good luck!
>
> Kind regards
> Morne
>
>
>
> --- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:
>
> From: dannyg887 <dannyg887@...>
> Subject: [Adults AMC] New York Area Doctor
> To: amc_adults@yahoogroups.com
> Date: Monday, September 14, 2009, 6:49 PM
>
>
>
> I am 32 years old and was diagnosed with Arthrogryposis at birth. I
> have treated the symptoms of Arthrogryposis like my scoliosis and
> related breathing limitations all my life and never really
> concentrated on seeing a doctor for my Arthrogryposis since i was
> very young. Staying active and PT was always the best treatment.
>
> I write to this group today to see if there is a doctor anywhere on
> the east coast, specifically the NYC Area, that specializes in
> Arthrogryposis that i can get an updated diagnosis on the type I
> have. My wife and i are looking to have children and want to make
> sure the chances are good that this is not something i can pass to
> them.
>
> I have read a lot that seems to make me think the form i have is not
> something that can be passed down but my brother was born with
> clubbed feet and getting an updated diagnosis is probably something
> good to have. My brother did have a heathy baby girl a year and a
> half ago.
>
> Any and all information will be greatly appreciated. Thank you for
> your time. Dan
>
> [Non-text portions of this message have been removed]
>
>


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

HI Morne, I would love to read your thesis.  I don't have  masters in
Psychology but I do have a Bachelor's and I also have AMC.  It affects me
pretty significantly but I am independent, work, drive etc.  Is your thesis
going to be online at all?



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of morne vanWyk
Sent: September-18-09 7:10 AM
To: amc_adults@yahoogroups.com
Subject: Re: [Adults AMC] New York Area Doctor





Hi Dan,

My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
in the process of finising a thesis on the social effects of arthrogryposis
on such individual (I'm studying towards a Masters degree in Research
Psychology). I live with mild arthrogryposis as well. Well, because of my
thesis, I did a lot of reading about A.M.C. Literature suggests that
arthrogryposis is not an heridetary condition. So, you can't pass it on to
your kids. The fact that your brother has a healthy little girl, bears
testimony to that. I have read a lot about other A.M.C.'ers who have healthy
children. What I'll suggest is that you read up a bit more on arthrogryposis
or contact Avenues for some info. I hope this helps.....

Good luck!

Kind regards
Morne



--- On Mon, 9/14/09, dannyg887 <dannyg887@... <mailto:dannyg887%40me.com>
> wrote:

From: dannyg887 <dannyg887@... <mailto:dannyg887%40me.com> >
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com>
Date: Monday, September 14, 2009, 6:49 PM



I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
treated the symptoms of Arthrogryposis like my scoliosis and related
breathing limitations all my life and never really concentrated on seeing a
doctor for my Arthrogryposis since i was very young. Staying active and PT
was always the best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i
can get an updated diagnosis on the type I have. My wife and i are looking
to have children and want to make sure the chances are good that this is not
something i can pass to them.

I have read a lot that seems to make me think the form i have is not
something that can be passed down but my brother was born with clubbed feet
and getting an updated diagnosis is probably something good to have. My
brother did have a heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your
time. Dan

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





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

Hi Dan,
 
My name is Morne, I'm 34 and I'm writing from South Africa. I am currently in
the process of finising a thesis on the social effects of arthrogryposis on such
individual (I'm studying towards a Masters degree in Research Psychology). I
live with mild arthrogryposis as well. Well, because of my thesis, I did a lot
of reading about A.M.C. Literature suggests that arthrogryposis is not an
heridetary condition. So, you can't pass it on to your kids. The fact that your
brother has a healthy little girl, bears testimony to that. I have read a lot
about other A.M.C.'ers who have healthy children. What I'll suggest is that you
read up a bit more on arthrogryposis or contact Avenues for some info. I hope
this helps.....
 
Good luck!
 
Kind regards
Morne
 
  

--- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


From: dannyg887 <dannyg887@...>
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Monday, September 14, 2009, 6:49 PM


 




I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated
the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young. Staying active and PT was always the best
treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have. My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have. My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your time.
Dan



















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

--- In amc_adults@yahoogroups.com, "dannyg887" <dannyg887@...> wrote:
>I too have amc. I have 2 kids. They are both healthy. My daughter has 2 of her
own and they are healthy. I know I am just one person but i just wanted to past 
this on to you. We went to a genetisis and we were told that our chances of
having normal children where lllike anyone elses. Take care .........Neal



























>
> I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.
>
> I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.
>
> I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.
>
> Any and all information will be greatly appreciated.  Thank you for your time.
Dan
>

I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated.  Thank you for your time. 
Dan

Hi, My name is Tiffany, I'm 33 and I have the worst type of AMC but I have a 13
year-old and a 10 year-old daughter and both are healthy as a horse. My son runs
in Track and my daughter dances. I did swim, play baseball, volley ball, and
I have won 12 blue ribbons in horse shows. I do not show anymore due to chronic
back pain
 
I recently had a collapsed lung and have found myself getting weaker in my legs.
I fall more then I ever have. I too need a doctor in the Illinois area to help
figure out exactly whats going on. I do walk more now due to my electric chair
dying on me three months ago and I can't push the manual. I have lost my medical
card so I can't get a new chair. I could use information on help to obtaining
one.
 
Thanks,
Tiny Tiger!

--- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


From: dannyg887 <dannyg887@...>
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Monday, September 14, 2009, 10:49 AM


 




I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated
the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young. Staying active and PT was always the best
treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have. My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have. My brother did have a
healthy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your time.
Dan



















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

I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated.  Thank you for your time. 
Dan

Hello AMC Adults!
  I'm wondering if folks out there would be interested in forming a community
driven advocacy group here at the Berkeley CIL? I see the group as being a place
where people can hash out and work together to solve concerns big or small,
issues being faced around barriers to access and cervices, or simply the ever
deteriorating state of California. The group can take on whatever shape members
want it to.
  If anyone out there is interested in getting involved feel free to get in touch
with me. Once enough people show interest we can decide on an initial meeting
date to get to know each other and start tossing around ideas.
Look forward to hearing from you,
Lauren

Not trying to start anything. Just curious to know what other disabled people
have on their minds about this topic.
 
BTW, I highly recommend reading HR 3200, if you haven't already.
 
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f\
:h3200ih.txt.pdf
 
It takes a bit to load.

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

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

HI there, I am 49 and have AMC.  I had a total hip replacement last year and
it has resolved some pain but caused many other problems. I have scoliosis
as well and since the hip replacement, my curvature has gotten worse and I
have been losing feeling in my buttocks down my legs and in my ankles and
feet. This has been going on for many years very slowly but since the hip
replacement the numbness has gotten much worse.



I did meet someone at the rehab centre I went to after the surgery who also
had AMC and had his second hip replacement and he has had great results.  He
does walk where as I do not so I think not being ambulatory and having hip
replacement does not work!!



Everyone is so different with AMC and how healing goes varies.  I regret
having it done and  I will not get the other one done which is not as bad as
the first one.  The only thing really that came out of this, once the
surgeon went in he did say it was worse than what the x-ray showed so
eventually my hip would have dislocated or the femur would have broken.so
that is how I rationalize having it done..



The pain was worse than  could have imagined, took me forever to get pain
under control and then I went home after 3 and a half months at rehab and
got CDIF..the horrible intestinal infection caused by antibiotics in the
hospital because I ended up have a few bladder infections, so had to go on
antibiotics, I was back in the hospital for a month and that was 6 months
ago and I am still struggling with trying to get my weight back ( I lost 24
lbs, so was down to 87 lbs from 111 lbs before the surgery).  I can really
only work part time so far anyways and pretty much have no stamina.



It is such a crap shoot to get surgery at an older age. I honestly thought,
that so many people get hip replacements much older so that I would sail
through!! I only had surgeries when I was a teen ager (spine fusions) and
then one when I was a child to release my heel cord tendons.  SO I was very
lucky as a child with AMC having so few surgeries compared to so many who
have gone through so much.  So I thought I would be fine....not so much!!!



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of Kristen
Sent: July-18-09 12:42 PM
To: amc_adults@yahoogroups.com
Subject: [Adults AMC] Hip/Knee Pain as an Adult





My name is Kristen. I have AMC (along with congenital muscular dystrophy),
and I am 30 years-old. Recently, I have developed pain in my right knee and
hip. After speaking to a doctor, he is suggesting a steoroid shot to buy
time for further surgery. According to the x-rays, the hip has rotated in
the socket, which is supposedly causing the pain. Has anyone else
experienced this problem around this age? What treatment did you pursue, and
was it beneficial?

Thanks,

Kristen





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

My name is Kristen.  I have AMC (along with congenital muscular dystrophy), and
I am 30 years-old.  Recently, I have developed pain in my right knee and hip. 
After speaking to a doctor, he is suggesting a steoroid shot to buy time for
further surgery.  According to the x-rays, the hip has rotated in the socket,
which is supposedly causing the pain.  Has anyone else experienced this problem
around this age?  What treatment did you pursue, and was it beneficial?

Thanks,

Kristen

You can follow our journey to bring them home at
http://roadtoanastasia.blogspot.com/
also if anyone has words of advice or info on helping them once they arrive home
I am all ears!

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

Come to the rally being held tomorrow 7/15 at 11:30am in San Francisco! Tell the
Governor that we will not sit quietly as the State Budget goes up in smoke! We
will gather in front of the Governors office at 455 Gate Ave, SF.

Tell Governor Schwarzenegger to protect families by signing a
responsible budget


Middle Class families are suffering. Police and firefighters are facing
layoffs. Seniors, kids and people with disabilities are getting hit
hardest by the budget crisis. Rather than demonstrating leadership to
solve these historic problems, our Governor is puffing on cigars.


Join a coalition of seniors, educations, students, people with
disabilities, interfaith leaders, labor leaders and others.

Hi, My name is Jessica Chi, I am an Avon Representative, also a mom with a
AMCer, I want to help in anyway I can, Arthrogryposis Multiplex Congenita
Support, Inc?(http://www.amcsupport.org) had done so much for our kids and
parents. I have asked my friends to go to my website to place an order
of Avon products and a percentage of profit will be donated to the?AMC support
group.
my website is WWW.youravon.com/jchi

Best Regards,

Jessica


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


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