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]

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

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

--- 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
>

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]

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]

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 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]

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

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

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 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]
>

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]

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]

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]

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.

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]

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]

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 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]

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

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
>

Hello im a new member lol
My name is Maria, I'm from Mexico, I'm 30 and i have AMC....i hope to
meet cool an interesant people....xoxo...



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

hola Maria, bienvenido! hehe... my Spanish isn't so good, but welcome to the
group. i'm 22, i'm from England and i also have AMC.

Lisa xoxo



To: amc_adults@yahoogroups.com
From: no_reply@yahoogroups.com
Date: Mon, 7 Dec 2009 03:05:17 +0000
Subject: [Adults AMC] HELLO!!!




























       Hello im a new member lol

My name is Maria, I'm from Mexico, I'm 30 and i have AMC....i hope to

meet cool an interesant people....xoxo...



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


















_________________________________________________________________
Use Hotmail to send and receive mail from your different email accounts
http://clk.atdmt.com/UKM/go/186394592/direct/01/

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

Hi Maria,
 
Welcome!!!!!! My Name is Morne. I'm 34 w/ AMC, and I'm from South Africa. (We
can't wait to play against you guys in next year's World Cup, LOL!!! )

--- On Mon, 12/7/09, mariaperezaboganster <no_reply@yahoogroups.com> wrote:


From: mariaperezaboganster <no_reply@yahoogroups.com>
Subject: [Adults AMC] HELLO!!!
To: amc_adults@yahoogroups.com
Date: Monday, December 7, 2009, 5:05 AM


 



Hello im a new member lol
My name is Maria, I'm from Mexico, I'm 30 and i have AMC....i hope to
meet cool an interesant people....xoxo. ..

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











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

My name is Adam Menze and I'm 38 years old.  The last time I have been to a
doctor for AMC was when I was 15 or 16.  Recently, I've been having some pain in
my left knee joint, so I've scheduled an appointment with Gillette's Lifelime
Specialty Healthcare in St Paul, MN (USA).  As a child I received services
through Gillette's Childrens Hospital in St Paul, MN.  Not wanting to see our
family physician for this is driving me to seek the care of a doctor who is
familiar with AMC.  I will be seeing Dr. Lee (sp?) on December 16th.  If anyone
can can answer a few of my questions, I'd appreciate it?

   a.. Have any of you used the services at Gillette Lifetime Specialty
Healthcare?
   b.. Have any of you seen Dr Lee (sp?), he is an orthopedic surgeon?
   c.. Does anyone have information regarding knee issues and AMC?  I am
ambulatory with about 85 degrees range of motion.
   d.. Is arthritis in the knee common?
   e.. Is knee joint replacement an option?
Thanks for your help.

Adam Menze
Ottertail, MN
218-367-7777

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

I can only respond to d. arthritis is common.

--- On Tue, 12/8/09, Adam Menze <amenze@...> wrote:

> From: Adam Menze <amenze@...>
> Subject: [Adults AMC] Knee joints and aging...
> To: amc_adults@yahoogroups.com
> Date: Tuesday, December 8, 2009, 7:12 AM
> My name is Adam Menze and I'm 38
> years old.  The last time I have been to a doctor for
> AMC was when I was 15 or 16.  Recently, I've been
> having some pain in my left knee joint, so I've scheduled an
> appointment with Gillette's Lifelime Specialty Healthcare in
> St Paul, MN (USA).  As a child I received services
> through Gillette's Childrens Hospital in St Paul, MN. 
> Not wanting to see our family physician for this is driving
> me to seek the care of a doctor who is familiar with
> AMC.  I will be seeing Dr. Lee (sp?) on December
> 16th.  If anyone can can answer a few of my questions,
> I'd appreciate it?
>
>   a.. Have any of you used the services at Gillette
> Lifetime Specialty Healthcare?
>   b.. Have any of you seen Dr Lee (sp?), he is an
> orthopedic surgeon?
>   c.. Does anyone have information regarding knee
> issues and AMC?  I am ambulatory with about 85 degrees
> range of motion.
>   d.. Is arthritis in the knee common?
>   e.. Is knee joint replacement an option?
> Thanks for your help.
>
> Adam Menze
> Ottertail, MN
> 218-367-7777
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>     amc_adults-fullfeatured@yahoogroups.com
>
>
>

Hi Adam,

I have a milder form of AMC, and have severe arthritis in my left knee from
overuse.  After seeing several orthopedic physicians in my area, I was told that
I was not a candidate for replacement due to the way I walk--or my 'gait.'  My
alignment is not normal (well, duh!) and therefore, the replacement, if
successful, would only last 5 or 6 years at most.  Not great odds, since I have
already had 4 hip replacements done on the same hip!
Hope that helps.
Laura

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