Adolph
Otto is credited with first describing arthrogryposis
in 1841. He described a baby born with curved extremities
including flexed elbows, hands and lower extremities, as well
as sciolosis
(1). In 1923, he invented the term, "arthrogryposis multiplex
congenita" which is another name he used to describe
children who had multiple joints contractures and partial
mobility of their body. The word Arthrogryposis means "curved
joint" which is a generalized fixation of a joint that
is present at birth.
The most common form of arthrogryposis
is Amyoplasia,
which is the lack of normal muscle growth or abnormal muscular
growth. There are three distinct categories; one condition
affects just the arms and legs, another affects the limbs
and other areas of the body, and lastly just the limbs and
central nervous system are affected. There are tons of complications
that are associated with arthrogryposis including clubbed
feet
& hands, dislocation
of the hips and joints, scoliosis,
and facial
asymmetry.
Arthrogryposis
affects both boys and girls equally, and can be detected at
birth. Anything that prevents common movements of a baby while
in the womb can create a risk that the child may not having
full movement of his joints when born. The condition is not
produced from a problem with formation of the child's limbs
or joints; it is due to the development of extra connective
tissue around the child's joint, occurring after eight
to ten weeks in the pregnancy (4).
No single cause has been known to
result in arthrogryposis, but there are ideas on how it is
caused. These theorys are thought to include: decreased space
in the womb for the fetus to move around, maternal fever,
viral infections, and/or environmental factors. The severity
of Arthrogryposis is thought to be related to how early in
the pregnancy the reduction in movement begins (2).
If a child is suspected to have arthrogryposis,
the doctors will examine and run multiple tests on the child.
Tests include X-rays, MRI's, Ultrasounds, CT scans, muscle
biopsy, and blood tests. Sometimes the doctor can diagnose
the baby even when it is in the womb using an ultra sound.
The lifespan of somebody who is diagnosed with arthrogryposis
depends on the severity of the disease, but many people who
have AMC (arthrogryposis multiplex congenital) have a normal
life expectancy. If, however, there is a central nervous system
problem, about 50% of patients die in the first year (3).
There is no cure for AMC (arthrogryposis
multiplex congenital), but there are treatments and adaptions
available that work to extend the lifespan, as well as to
improve quality of life. This paper will touch on direct and
secondary treatments for AMC, but the main focus will be on
adaptive equipment and exercise for those that are diagnosed
with the disease.
Specific courses of treatment vary,
depending on the diagnosed level of AMC. One direct treatment
is surgery. Surgery is used to correct certain deformities
that cannot be improved by the use of splints or casts. There
are two types of surgeries performed, and the type used depends
on how old the person is. Soft tissue operations are performed
on younger patients who have less severe deformities. During
this surgery the muscle/tendon, ligament, artery, or nerve
is cut where the problem occurs. The second surgery, which
is called Osteotomy,
is performed on older children with more severe deformities
who have dislocated joints and bones corrected.
Although there is no cure for AMC,
researchers continue to learn about what kind of physical
activities and exercise programs can be helpful to maintain
strength (as much as possible) for those who are dealing with
this disability. The main types of treatment for AMC are physical
therapy and occupational therapy. During physical therapy
the physical therapist (PT) helps the child with range of
motion exercises of affected joints by stretching them, which
helps with flexibility and muscle strength to help improve
movement. PTs also work with a child on motor skills; teaching
the child how to sit on his own, how to crawl, to walk, and
to play. During occupational therapy the OT (occupational
therapist) mostly teaches the child personal care, such as
how to eat, how to get dressed, and how to accommplish things
on his own.
Different types of equipment has been
developed to aid those with physical disabilities (including
AMC), so that individuals can stay active and functional in
a safe way. Splints and casts are used to help hold the joint
in place and are sometimes used in therapy. They help keep
joints stretched, and help to prevent and improve contractures.
Some splints are only used at night, and some children go
through a series of splints and casts depending on their progress
and their different ranges of motion.
Inexpensive adaptions can be made
for children with AMC, at home and at school, to keep children
involved in physical activity with their peers. Swimming is
a great activity because it helps strengthen muscles and improves
mobility. Swimming can be a lifelong activity for those with
or without physical limitations (5). Children can use adaptive
paddles for swimming up and down the pool, which helps with
mobility.
Bowling
ramps can be used for bowling. It's an easy way for kids
to participate in physical activity and to learn how to better
use their arms. The use of a beach ball for catching and hitting
are also ways for building arm strength, and this exercise
does not put a lot of stress on joints and bones. Horseback
riding is a great physical activity for children with AMC.
There are tons of programs that give children the opportunity
to participate in activities that they probably never thought
they could do including; hippo therapy, therapeutic riding,
and recreational riding.
Even children who don’t have
the ability to walk, and use wheel chairs, should be able
to participate in physical activities. Wheel chair soccer
and basketball can be played simply by having the child hold
a paddle and hit the ball across the field. Children who only
have lower extremities affected can play wheel chair basketball.
If they are younger and have trouble shooting the ball, the
baskets can be set lower or children can make their own baskets.
Wheel chair athletics emphasizes strength, coordination, and
endurance. These types of activities are individual and part
of therapy, but these activities can also be used with teams.
Although living with AMC can be very
challenging, it is very important for parents to keep up with
their child's treatment, to keep their child in physical therapy,
and to keep him as physically active as possible. Maintaining
strength and flexibility is the best way for their child to
make progress and to learn. These tasks can be performed regardless
of the availability of resources to the child. Any child who
is diagnosed with this disorder should have the chance to
get stronger, improve their health, and improve their quality
of life.
Biography: Chelsea Howell is currently a junior at the University
of Florida with a major in Health Education and Behavior.
She is originally from Fort Lauderdale, Florida, and plans
on moving back down to south Florida to pursue her dreams
in Nursing after graduation. Throughout the past two years
she has done tons of community service and volunteer work
as a student-athlete, which has not only taught her how to
lead, but to help others out and make herself a better person
as well.
Biography: Christine Stopka is an Adapted Section editor
for pelinks4u. She graduated from the University
of Virginia with a PhD in Special Physical Education. Currently
she teaches exercise therapy and adapted physical activity
at the University of Florida. Christine established the Athletic
Training & Sports Medicine Undergraduate and Graduate
Specializations, the Student Injury Care Center, and the athletic
training community out-reach program serving the North Central
Florida area high schools. Read more on Christine's biography...
