Lonewolf: OK hello everyone

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

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

anny1: AMC IS CAUSED BY:

anny1: Anything which prevents normal joint movement before birth can result in joint contractures

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

anny1: lily

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

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

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

anny1: rock

ROCK-: what are the first signs

ROCK-: yes

anny1: it is noticed at birth due to deformaity of joints

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

anny1: no not really

WonderW-: ok

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

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

camille: and you say this doesn't hurt ?

anny1: not for me except for arthritis which is not a ral part of the amc

anny1: kark

Kark: Uncurling relaxes the muscles which takes more effort to tighten them, with weak muscles the extra effort is a disadvantage

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

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

Lily: do bones break more easily without muscles to protect them?

anny1: hmmmmmm

anny1: kit

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

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

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

wacky: most I know cant

Adopmom3: so does maternal age have a none affect

wacky: thanks kit

Kark: 50% walk w/out aides

Kark: 25% w/wheelchairs

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

Woz: thanks anny

judi: and esp thank everyone who was kind enough to follow the rules

Kark: stats from resent survey

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

Becky19: great job, anny

anny1: see ya in disabled

END