Disabilities-R-Us

Created by and for people with physical disabilities.

Disability of the Month: AMC

Apr 28, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  disabled
  ChanServ ([email protected])
  Lily
  Kark
  Mooooooo ([email protected])
  anny1
  atrpilot1
  camille
  Lonewolf
Lonewolf: OK hello everyone
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Kark: hi judi
Lonewolf: tonight we have a guest speaker
Lonewolf: anny
Lonewolf: she is going to give a talk on amc
anny1: I am going to start by asking daniel to help me out and do what he does anytime anyone asks what AMC is
anny1: go ahead Daniel
Lonewolf: the rules apply
Lonewolf: ok anny
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Mooooooo: AMC (Arthrogryposis Multiplex Congenita) is a term describing the presence of multiple joint contractures at birth. A contracture is a limitation in the range of motion of a joint.
Mooooooo: In some cases, few joints maybe affected and the range of motion may be nearly normal. In the classic case of Arthrogryposis, hands, wrists, elbows, shoulders, hips, feet, and knees are affected. In the most severe cases, nearly every body joint may be involved, including the jaw and back. Frequently, the joint contractures are accompanied by muscle weakness which further limits movement.
Mooooooo: No, it doesn't hurt.
anny1: hi everyone
Kark: lol
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anny1: AMC IS CAUSED BY:
anny1: Anything which prevents normal joint movement before birth can result in joint contractures
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anny1: yes lw
Lonewolf: as in like a small womb?
anny1: there are 4 causes of amc and i will try to list them
Lonewolf: ok sorry
anny1: 1) Muscles do not develop properly (atrophy). In most cases, the specific cause for
anny1: muscular atrophy cannot be identified.
anny1: 2) There is not sufficient room in the uterus for normal movement. For example, the
anny1: mother may lack normal amount of amniotic fluid, or have an abnormally shaped uterus.
anny1: this is what you mentioned lw
anny1: 3) Central nervous system and spinal cord are malformed.
anny1: 4) Tendons, bones, joints or joint linings may develop abnormally. For example, tendons
anny1: may not be connected to the proper place in a joint
anny1: does anyone here with amc know their specific cause?
Mooooooo: no idea, but my sister has it too
Kark: I wasn't told that by doc
anny1: my cause is the neurological type
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anny1: lily
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Lily: are some causes genetic, then?
anny1: kark
Kark: I didn't know there were diffferent types till recently and I have it, you would think I would know
anny1: i think a few cases are but not most
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WonderW-: can there be a combination of the 4 causes that causes it, or is it usually one?
anny1: i suppose there is a possibility of diff caues in one person but not likely
anny1: kark
camille: can anything be done to help
Mooooooo: stretching
anny1: thanks cami next section is the treatment
anny1: becky
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Kark: I get the impression that they have found common situations in people that have it to come up with the 4 typs but I think they are really sure what causes it
Becky19: Does anyone know, how common is AMC?
anny1: i think i read that it is one in every 3000 births but am not sure
WonderW-: is there a difference in manifestation between those 4 types like with CP?
anny1: Physical therapy has proven very beneficial in improving muscle strength and the range of motion of affected joints
amc_Roy: I've heard that there are 200 with AMC in California, which has about 50 million people in it
Mooooooo: there were 3 in my home town
anny1: yes WW some physical, some neurological some genetic
Becky19: so a bit more rare than some other disabilities, then?
amc_Roy: yes
anny1: becky
Becky19: Is it progressive, or does it pretty much stay the same?
anny1: it is not progressive, but there are things that cancomplicate it like arthritis
anny1: becouse of deformed joints
anny1: rock
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anny1: rock
ROCK-: what are the first signs
ROCK-: yes
anny1: it is noticed at birth due to deformaity of joints
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anny1: kark
Woz: to join just type like you normaly would
ROCK-: ok
Kark: Arthrogryposis is non-progressive. That is, it does not worsen with age. Furthermore, with physical therapy and other available treatments, substantial improvement in function is normally possible. Most people with Arthrogryposis are of normal intelligence and are able to lead productive, independent lives as adults
anny1: thanks kark
anny1: now lets talk treatment
anny1: Physical therapy has proven very beneficial in improving muscle strength and the range of motion of affected joints
anny1: Splints can be made to augment the stretching exercises to increase range of motion. Casting is often used to improve foot position.
anny1: roy
amc_Roy: does anyone know if continued treatment would benefit older persons with amc
amc_Roy: I'm 44
anny1: kark
Kark: What are splints, are they like braces?
anny1: i don't know anyone else know about splints or treatment after adulthood
anny1: becky
Becky19: This might be a dumb question, but why is it abbreviated amc?
Kark: and I never had treatments till I was older and stretching and light exersice with light weights help
anny1: arthrogryposis multiplex congenita
amc_Roy: thanks Karen
Becky19: ahhh...thank you
anny1: lw
Kark: oooops
Lonewolf: I would think some stretching would improve the joints at anytime
Lonewolf: and a splint is kinda like a firmer brace
anny1: thanks lw
Lonewolf: just not as much in older age
anny1: 2. What type of therapies have you had and were they helpful?
Kark: I had some treatments real young surgery, I ment continously I didn't have treatments
anny1: Surgery should be viewed as a supportive measure to other forms of treatment when they have achieved their maximum result
WonderW-: contractions are common with CP as well, they don't really help contractures already there, but help prevent others
Mooooooo: mom stretched me
WonderW-: contractures
anny1: i never had any therapy just surgery and casting
anny1: Surgery should be viewed as a supportive measure to other forms of treatment when they have achieved their maximum result
ROCK-: did it help,anny?
anny1: yes rock put one hip back corrected feet to some extent
anny1: Less frequently, surgery is required on knees, hips, elbows and wrists to achieve better position or greater range of motion.
WonderW-: did they reset your hip?
anny1: yes they did one and tried the other 2 times but it is cronically dislocated
WonderW-: did that reduce your mobility?
WonderW-: I ask because my hip has a contracture
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anny1: no not really
WonderW-: ok
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WonderW-: thanks
anny1: it rides on the out of the socket and makes one leg longer than the other
anny1: kark
Kark: I have both hips dislocated knees mostly locked, club feet and hands and scoliosis
Kark: and onle leg is longer for me too
anny1: i don't have contractures but legs only bend to a sitting position
Kark: but they haven't correct w/hip surgery
Kark: so your muscle are effect not joints?
anny1: do you use a chair kark?
Kark: I use crutches
anny1: muscles are weak
anny1: moooooooo what about u?
Mooooooo: hmmm
anny1: crutches?
Mooooooo: legs are bent
Mooooooo: about 10%
Mooooooo: cant kneel further than sitting position
Mooooooo: affects eyes
Mooooooo: and hands
Mooooooo: can open hands all the way
Mooooooo: cant
Mooooooo: dislocated internal organs
Mooooooo: no surgeries for AMC but 8 surgeries for other stuff
anny1: lw
judi: what organs?
Mooooooo: lungs are much lower
anny1: interesting
Mooooooo: no crutches
Mooooooo: when in shape, i can walk 20/30 miles a day
Mooooooo: mountain climbing
WonderW-: is that what sometimes makes it hard for you to breathe?
anny1: roy how does amc affect you?
Mooooooo: yeah
anny1: kark?
WonderW-: I didn't know that, nothing like sharing :)
Kark: Mooooooo answered in last statement but how about you HelloKit?
amc_Roy: effects arms, legs, wrists, use wheelchair for distance, but walk in apartment, no crutches, they were more of a hindrance, legs only then about 10%
amc_Roy: so I swing legs to walk
HelloKit: huh? (sorry, distracted tonight...)
anny1: kit how does amc affect you?
HelloKit: ummm
anny1: movement etc
HelloKit: no deltoids (the muscle that pads the shoulder), shoulders tight, no biceps and very little triceps, left elbow bends about 90 degrees, right elbow about 20... both only passively (obviously since i have no biceps)
HelloKit: ...
Kark: Sorry if I put you on the spot
HelloKit: hands curled under (sometimes referred to as club hands), all leg joints tight, lots of pops and crackles, mild club feet...
HelloKit: and also a jaw contracture, sort of like a crossbite, makes chewing meat difficult sometimes
anny1: judi
judi: can u uncurl hands
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HelloKit: a lot more than when i was a baby, yes, but they are still at about a 20 degree angle, which works better for me than straight wrists would since i have so little strength
anny1: cami
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camille: and you say this doesn't hurt ?
anny1: not for me except for arthritis which is not a ral part of the amc
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anny1: kark
Kark: Uncurling relaxes the muscles which takes more effort to tighten them, with weak muscles the extra effort is a disadvantage
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Kark: Uncurling relaxes the muscles which takes more effort to tighten them, with weak muscles the extra effort is a disadvantage
Kark: ooops
anny1: has anyone had aditional problems associated with ageing
anny1: roy
Mooooooo: a tummy that wont quit
amc_Roy: broke arm 2 yrs bookago
amc_Roy: ago, hasn't been same sence
anny1: carly
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anny1: kit
HelloKit: i get a lot of shooting pains, etc. that just seem to be for the sake of making me miserable... i.e. they don't indicate anything actually wrong... i attribute them to possible nerve damage which may have resulted from whatever it was that caused my amc
Adopmom3: what is the topic
Mooooooo: AMC , guest host, ANNY!!!!!!!!!!!!
anny1: lil
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Lily: do bones break more easily without muscles to protect them?
anny1: hmmmmmm
anny1: kit
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HelloKit: not sure about that but i know they definitely break due to lack of flexibility... i've broken my arm 3 times trying to catch myself when falling, since elbows don't bend...
HelloKit: finally learned to keep arms at my sides when falling, lol
anny1: ouch kit
anny1: roy
amc_Roy: don't think they brke more, just problem in healing
amc_Roy: braake
anny1: i have not had any bones brake
amc_Roy: kit, I know what you mean on falling
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Adopmom3: what would cause the bones to break more is the lack of ability for things like calcium etc to enter
Adopmom3: exercise aids in the ability for these things to cross the barriers
Kark: I have been lucky, nock on wood, no broken bones
anny1: sometimes the shear number of fall could account for more bones braking
amc_Roy: knock
WonderW-: lol
Kark: ooops
anny1: i found the cause of my amc
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anny1: it is becouse my brain did not develop as it was supposed to in avery early stage was what i was told by
anny1: doctors after an mri
judi: is that it anny?
anny1: well anyone else have any comments or questions
Kark: I just wish I could reach my feet
wacky: Yea anny I have one
anny1: yes wacky
judi: I want to thank anny for an excellent presentation
judi: go on bri
anny1: thanks judi
amc_Roy: my mom thinks it's because she was 43 in 1954 win I was born, she figures it was her age
wacky: Most ppl I know w/ AMC are w/c users what percent are actually able to walk that have amc
Kark: Same age for my mom w/me too
anny1: my mom was 42
amc_Roy: hmmmm
anny1: don't know wacky i walk
wacky: ok
* HelloKit is only a part-time w/c user, no clue
wacky: most I know cant
Adopmom3: so does maternal age have a none affect
wacky: thanks kit
Kark: 50% walk w/out aides
* amc_Roy also part time wheelchair user
Kark: 25% w/wheelchairs
* judi gives anny round of applause
wacky: ok another question
anny1: thanks judi
atrpilot1: great job anny!!!
camille: yes very good anny
judi: Thanks everyone for coming
Kark: Yes very good anny
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Woz: thanks anny
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judi: and esp thank everyone who was kind enough to follow the rules
Kark: stats from resent survey
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anny1: thanks every body for participating
Lily: very well done, anny:)
MsAmazin: sorry we missed most of it
Woz: yup
judi: exceptional job girl
wacky: me too anny
judi: yes rock
anny1: awwwww
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Becky19: great job, anny
anny1: see ya in disabled
END

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