Volume XVI, No.2, July, 1995
AVENUES can now be reached at the following e-mail
If you have access to the Internet, drop us a note and we'll
you on our electronic mailing list. If possible, please send
intended for the next newsletter to the e-mail address. That will
save us from having to re-type the letters.
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The National Arthrogryposis Foundation, Inc. has
produced a video entitled "Coping with Arthrogryposis: A Parent's
Perspective," which is available free of charge to interested
individuals. The video touches on the emotional and psychological
issues associated with arthrogryposis as seen through the eyes of
parents and gives insight into the coping process. The video is
intended for anyone who may come in contact with children with arthrogryposis,
whether as a parent, physician, therapist, counselor or family member.
To order your video, please call 205-823-0786 and
leave your name and address or mail a request to:
3356 S. Cove Trace
Birmingham, AL 35216
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by Dr. Mike Bamshad
In an effort to better understand the causes and
natural histories of children and adults with congenital limb malformations,
the University of Utah and the Shriner's Hospitals for Crippled
Children are collaborating to identify genes causing the hereditary
forms of arthrogryposis. The ambitions of this project include classifying
the arthrogryposis disorders by their biological relationships,
improving diagnostic capabilities, enabling clinicians to provide
more efficient management, and achieving greater accuracy in predicting
long-term sequelae. The first step toward these goals is to identify
where a gene causing a hereditary arthrogryposis is located.
Recently, our laboratory identified a region of
chromosome 9 in which a gene for a form of distal arthrogryposis
type I (DA1) is located. Individuals with DA1 frequently have congenital
flexion contractures of the hands and feet and occasionally abnormalities
of the elbows, shoulders, knees and hips. DA1 is the most common
of the distal arthrogryposis and is frequent cause of dominantly
inherited club foot. The isolation of the DA1 gene may help us to
find other genes causing congenital contracture syndromes. We already
know that DA1 is not caused by mutations in the same gene in all
families. In fact, it is likely that many different genes can cause
arthrogryposis. In order to find the genes causing DA1, many more
families need to be studied.
We are also investigating many other forms of distal
arthrogryposis. Some of these other forms are associated with scoliosis
(an abnormal curvature of the spine), cleft palate (a hole in the
roof of the mouth) or short stature.
If you or your family would like more information
on this project, please contact our offices in the Division of Medical
Genetics at the University of Utah. The telephone number is 1-801-581-8943
or mail to:
Dr. Mike Bamshad
Division of Medical Genetics
Department of Pediatrics
University of Utah
50 N. Medical Drive
Salt Lake City, UT 84132
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- Are They Necessary?
AVENUES would like to hear from families and medical
professionals on the issue of muscle biopsies on an arthrogryposis
baby. What new information can they give us? Can a diagnosis and
prognosis be made without them? Are muscle biopsies really necessary?
Please send remarks for the January '96 newsletter (deadline is
November 1, 1995).
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AMC Seminar Needs
to be Held
We are looking for a set of medical professionals
who would be willing to sponsor a seminar on arthrogryposis in the
year 1996. The need for this is great. Information needs to be shared
and discussed. Please contact AVENUES for help and information.
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Update on Adoption
Last spring, AVENUES sent out a flyer about two
Russian children with AMC who were available for adoption. The two-year-old
girl, Svetlana, has found a home but Maxim, the three-year-old boy,
has not yet been adopted. If you are interested in the adoption
of Maxim please contact:
Americans for International Adoption
877 S. Adams
Birmingham, MI 48009-7026
For information about other children with special
needs who are awaiting adoption, contact:
The National Adoption Center
1500 Walnut Street Suite 701
Philadelphia, PA 19102
(215) 735-9988 or1-800-TO-ADOPT
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From AMC Clinic in
Once again it is time to start looking at the calendar
to plan the arthrogryposis clinics for the rest of the 1995 season.
The Rehabilitation/Arthrogryposis team has set aside these dates:
- August 30th
- November 29th
If your child is in need of appointments this year,
you may call Shannon at 206-526-2180 to schedule appointments.
On "Arthrogryposis Clinic" days, the
Rehabilitation team is continuing to offer a comprehensive clinic
experience including O.T., P.T., Rehabilitation Physician, Orthopedist,
Genetics and Nursing. There is also a room available, on this day,
12:00-1:00 lunch hour for parent and kids to bring their lunch and
meet with other families; a time to share your experiences and network
with each other.
Please feel free to contact Lyn Sapp if you have
any questions, at 206-528-2644.
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Post Polio Syndrome
Arthrogryposis bears some similarity to polio in
that many muscle groups can be affected. In polio, a viral infection
can damage the anterior horn cells in the spinal column which connect
to the muscles. This leads to the muscle paralysis and/or weakness.
Researchers have also found degeneration of the anterior horn cells
in cases of arthrogryposis, although the cause of that degeneration
has not been identified.
The similarities between polio and arthrogryposis
make current studies on post-polio syndrome of interest to those
with arthrogryposis. Post-polio syndrome occurs 15 or more years
after the initial polio attack and involves a variety of health
problems: "unaccustomed fatigue, a period of muscle aches and
pains, new weakness in the muscles previously affected, or even
in what were thought to be unaffected muscles, functional loss,
cold intolerance, or new muscle atrophy." Those with the most
severe cases of polio tend to get post-polio syndrome earlier. Studies
have estimated that anywhere from 20% to 100% of those with polio
suffer from post polio syndrome, depending on how it is defined.
There are about 640,000 paralytic polio survivors according to a
When muscles lose their nerve supply, as happens
in polio, the remaining nerve cells tend to "sprout" and,
at least partially, replace the nerve connections that have been
lost. The result is that one nerve cell supplies several times more
muscle fibers than normal. To some degree the loss and re-growth
of nerve connections is constantly occurring in polio survivors.
Researchers have found that the remaining motor cells in the spine
are under great metabolic stress from the constant high rate of
use and from a continual loss and re-growth of the nerve supply
to the muscles.
One theory is that the post-polio muscle weakness
occurs because the balance between the loss and re-growth of nerve
connections to the muscles is upset for some reason. The result
is the loss of total functioning muscle fibers and muscle weakness.
Another theory is that post-polio syndrome is caused
by "chronic overuse damage". Because polio survivors tend
to use their muscles at closer to their maximum strength, there
may be some damage to the muscles over time. Although exercise can
still be beneficial to post-polio sufferers, it is recommended that
they take frequent rests or "time-outs".
Other theories for the cause of post-polio syndrome
include re-activation of the polio virus, hormonal changes (lack
of growth hormones), normal aging processes, and compounding effects
from other health problems. (Based on Post-Polio Syndrome 101: Acute
Polio and Post-Polio Theories, in Polio Network News, Fall, 1994)
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A Note of Thanks
We would like to acknowledge and thank Dr. Peter
Williams of Australia for his many years of work in treating children
with arthrogryposis - he has now retired.
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Avenues Wish List
- reproduction of past newsletters (cost: $50.00)
- postage scale
- reproduction of bibliography (cost: $100.00)
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From Families Around
and Dawn Courter
4 Green Court
Barnegat, NJ 08005
Courtney is now five-year-old kindergartner in
the public school. She is doing terrific and is a brilliant student.
She can read, add and subtract, and her mind is just incredible.
She physically is doing very well, she walks and takes gym with
the other kindergartners (she loves gym the best). Our doctor (Dr.
Laufer) says she is doing terrific and progresses more every time
he sees her.
and Anna Showalter
Rt #1 Box 513
Wryers Cave, VA 24486-9412
After ten normal, healthy children, we too, became
the parents of an AMC child. Caleb was born 5-26-94. His umbilical
cord was wrapped twice around his neck and oxygen was needed. He
was put in casts at three months (through six months) of age. He
is now in AFO's. Surgery on his club feet will be done when he is
approximately one year old.
Caleb has stiffness to some degree in most of his
joints. Physical therapy has been increased to weekly since he no
longer wears casts. An infant educator comes to our home weekly.
Caleb's condition is considered a milder case - below 50% severity.
It would be interesting to hear about AMC babies
in Caleb's age bracket.
Houston, TX 77061
I have been meaning to write you for some time
about my three-year-old grandson, Casey. He was born with AMC, amyoplasia
type. Of course we were all shocked, saddened, and frightened of
the unknown. As a first and only time grandmother, I was a basket
case. It was tough taking Casey to Shriner's Hospital here in Houston
for casting, physical and occupational therapy. His arms and legs
are both very affected and his prognosis for walking has not been
Casey and his parents moved to Alabama last September.
In January, they made a trip to the Shriner's Unit in Lexington,
Kentucky. The doctor there had a totally different opinion about
surgery for straightening Casey's legs than the doctor in Houston.
His approach is much more aggressive and he's wanting to start surgeries
soon. Since getting these two different opinions, we have decided
to take Casey to the arthrogryposis clinic at Alfred I. DuPont Institute
in Wilmington, Delaware for a third opinion. We certainly want him
to have every chance to be the best he can be, but we don't want
to put him through these surgeries if they aren't going to work.
His knees are quite bent and stiff. We have heard that the doctor
at DuPont knows a great deal about AMC and we are hopeful that he
will know the right thing to do.
Casey is the dearest child there ever could be.
He is so happy and intelligent and very personable. He has an electric
wheelchair which gives him some independence. He goes to the early
childhood program at a public elementary school and the teachers
are quite impressed with him.
I know Casey has many tough times ahead, but with
his darling personality and bright mind, I know he will succeed.
We have AVENUES and read it over and over. We also
subscribe to EXCEPTIONAL PARENTS magazine which is a very good source
of information for families with a disabled child.
Please add my name to the list of people wanting
to share information about these most precious children.
6911 Elzey St.
Fort Wayne, IN 46809
I am looking for any adult who has had a hip replacement.
Please call immediately.
and Hortensia Alaniz
15223 Redbud Leaf Ln.
Cypress, TX 77429
Do you know of any organizations that "donate"
new or used computers to handicapped children?
and Jeff Massa
8 Bowman Way
Newark, DE 19711
I recently received the 1-95 issue of AVENUES.
After reading it, I fell so blessed that my girls, Andrea (11-28-90),
now four years, and Olivia (4-29-93), nearly two years, have been
released from Dr. Scott's care at DuPont Institute. They were both
diagnosed with AMC at birth, even though we'd been told the chance
of any of our children could have AMC was only 1 in 4. We beat the
They both had minor cases of AMC affecting their
hands. With splinting and physical therapy, they're both able to
do anything other children their ages do.
I'd like to pass on to other readers that we experienced
a lot of problems obtaining insurance. Finally, we were told of
Disabled Children's Medicaid which is a program sponsored by the
state of Delaware. I recommend that other parents of children with
AMC check with their state government offices to see if they are
eligible for this benefit.
and John Reese
39 Marcadon Ave.
Ridgefield, CT 06877
Glad to hear you are on-line! I may pop in some
night. What a great way for parents to get immediate help...wish
they had computers when my son was born twenty-six years ago. I'm
sure he'd be happy to correspond or receive calls from parents with
My son, John, was born with a moderately severe
case of arthrogryposis multiplex congenita on April 2, 1968. He
will be twenty-six and is married to a lovely girl, Heidi. They
live at 224 Kingsboro Avenue, Upstairs Apartment, Gloversville,
New York 12078, phone: 518-773-7597.
When John was born, my brother-in-law was at Harvard
Medical School so he was able to find out where John could get the
best medical care. Our pediatrician was able to diagnose John's
problem as he had had a patient two years earlier.
At birth John's elbows were bent totally backwards;
so were his knees. His shoulders curved inward badly, his toes were
bent to his heels and his hands folded into touch his wrists and
nothing moved but one little finger. I guess I should have suspected,
since I felt next to no movement during the entire pregnancy - just
the little finger tickling me.
John was taken via ambulance, within 24 hours of
birth, to Boston Children's Hospital where he was under the care
of Dr. Arthur Pappas. He still sees Dr. Pappas but at the University
of Massachusetts Medical Center, 55 Lake Avenue, Worcester, MA 01605,
508-856-2372. He stayed there for the first three months of his
life. For one of those months, he had pins through his legs in three
places to give 24-hour traction to his knees so they would bend.
He was given physical therapy two to three times per day for 1 1/2
hour periods. He wore casts on his arms, hands and legs until he
was eight months old, He had two sets of casts for his legs, one
extended and the other flexed, which were switched several times
At three months of age, John's body was straight,
but little moved. I went to the hospital daily, for one week to
learn the therapy. It consisted of stimulating (stroking) each muscle
group hoping for a little jerk or movement ...eventually after days
or weeks, there was a little movement. Also, each joint had to be
moved by giving traction (a gentle pull on the joint to keep the
joint from being harmed when moved, and then bending carefully and
holding to the count of ten and releasing. This was to be repeated
10 times, if possible, and done three times per day up until six
months for 1-1 1/2 hours. Then done twice a day up to two years,
then once a day to age ten spending about 15 minutes a day. While
doing these exercises I would tickle and play with John and love
him up when I was finished. He came to hate these exercises about
this time and fortunately, 1found that there was a physical therapist
he could see at school instead of going to gym. The exercises are
very important for AMC. Although AMC is not a deteriorating disease,
it can regress. If exercises are not done, joints will tighten up.
There were several times while doing the exercises
my husband broke a bone. We would get in the car and drive the three
hours to Boston to get it set as only Dr. Pappas seemed to know
what to do. Besides these trips, we would see Dr. Pappas about every
three months and at that time x-rays were taken and a physical therapist
would monitor the progress and tell us what we had to work harder
on and what was going well. The therapist would give me new exercises
Johnny walked at twenty months and fed himself
at about two years...At five he learned how to get up by himself
when he fell.
At six years old he had 75 degrees bend in his
knees and 90 degrees in his elbows, but no biceps. Other muscles
took over and both hands, together, would bend for feeding etc.
Johnny was a very happy, outgoing child. When asked about his disabilities,
his answer (and ours) is "I was born this way." We explained
to him that anyone teasing him had worse problems than he did, because
theirs were in their head. Everyone has some kind of problem...allergies,
overweight, whatever. He had lots of friends and found his own way
to everything everyone else did. At six he started to learn how
to dress himself and could put on his underpants and pants.
John learned to swim, ice skate, roller skate,
XC ski and horseback ride. For five years once a week I took him
from school in the middle of the day to go to the Pegasus Horseback
Riding Program in Darien at the Ox Ridge Hunt Club. He loved it.
At about fifth grade I learned that the school system employed a
physical therapist so we got him enrolled in the program as he was
really very limited in what he could do in the regular gym. He had
two 45-minute periods a week for physical therapy where he got therapy,
exercises and worked out on a nautilus machine. His therapist Bonnie
Fischer was terrific and became a good friend.
At ten, he was operated on his left hand to take
out the webbing. This operation wasn't very successful.
At thirteen, John was still very happy and active.
He attended the seventh grade at the local junior high school via
bus. The only accommodations which were necessary were three sets
of books - one in the classroom, one at home, and one in the study
hall. He also had permission to leave any class five minutes early
and to use the library stairs. Outside of school he enjoyed riding
on his electric bike made by Pedal Power in New Jersey.
He eats by either leaning on the edge of the table,
or bending both arms with the hands together. Somehow, this compensates
for the lack of biceps, and allows him to lift his glass. He has
been dressing himself for several years, but added the finishing
touches at about eleven or twelve years old. Since he has no biceps,
but does have a 90 degree bend in his elbows, he uses the wall or
a bureau to lean on to pull a shirt over his head and take it off.
Teeth also come in handy. It helps if the shirt is a little bit
big so it shakes down easily. To put socks on, John uses garters
attached to two-foot long grosgrain ribbons. He uses two of these,
one on either side of the sock. I used to attach them for him the
night before, but by age thirteen he could attach and detach them
himself. I put 1 1/2" velcro at the top of his pants so they
press together easily (sewn over snap/button). He has an elastic
belt which has a magnetic closure which he threads through the loops
of his pants before putting them on. Again, by maneuvering, he can
close this...He uses a long-handled shoehorn for his shoes but sometimes
doesn't need this. He prefers sneakers, or shoes with basically
flat rubber soles. To tie, he bends over with his head against the
bed, so as to not lose his balance. He started putting his coat
on by throwing it over his head, but now puts one arm in at a time,
and zips by leaning against the wall. Hats go on and off with wall
The years between the age of thirteen and twenty
were very hard for John. Although he had always seemed well adjusted,
we should have had family counseling all along. He began having
difficulties in his teenage years when the other boys were getting
into sports because he thought we thought he was crazy...he has
eight broken bones - usually elbow or leg from falls when he did
not use his best judgment.
At eighteen he was a senior at the local high school,
attending all classes except gym for which the physical therapy
was substituted twice a week for 45 minutes where he worked on a
weight machine and did other exercises...He got his license at age
sixteen and drove a regular automatic car. He was on the high honor
roll in his senior year and appeared to be a friendly, happy individual.
John had a girlfriend for about six months in his senior year. He
went to all the proms and is a very good dancer. He was accepted
at Union College in Schnectady, New York and went there 1 1/4 terms.
He started college in adverse conditions - his girlfriend broke
up with him because of pressure from her parents about his disabilities
and he had fallen and broken his arm and was able to figure out
how to function on his own so insisted on starting rather than delaying
college. He did quite well the first couple of months but the fraternity
he pledged rejected him because they felt he might fall down and
sue them. This devastated him. Things were all down hill from there.
He asked to come home...He worked for 1 1/2 years at Friendly's
restaurant and then applied to Western New England College in Springfield,
John's work experience to this point had consisted
of a checkout person at Stop and Shop for about a year, a waiter
at Friendly's Ice Cream Shop and a cashier and plannogrammer at
John graduated from Western New England College
in May, 1993, and has maintained about a 3.0 average. It was the
perfect school for him. He was not the only disabled student on
campus like he was at Union.
He convinced his lifelong friend, Heidi Smith,
to attend AIC down the street from WNEC. He started to date her
and they became engaged the summer of '91. They were married August
23, 1992. Heidi graduated from AIC May,1994. Heidi and John are
very happy. They both work for Lexington Center in Gloversville.
The company cares for mentally retarded adults.
9018 Katherine St.
Taylor, MI 48180
I am diagnosed with Arthrogryposis Multiplex Congenita
and am writing to you because I don't know a great deal about my
condition. Please place my name in your registry of individuals
with my condition.
I would appreciate knowing about any resources
in my area (Detroit, Michigan) that might be of assistance to me.
I am a 15-year-old female and attend school at Truman High School
in Taylor, Michigan. I plan to attend college after I graduate from
I am personally interested in knowing why I was
born with Arthrogryposis Multiplex Congenita and how this affects
my height (59.25"). What is the likelihood of my children having
this condition? I have a leg length discrepancy of about 1.5"
which is giving me pain in my longer hip and my shorter knee "pops
out". I'd be interested in reading about what's being done
for these types of lower extremity conditions in people with Arthrogryposis
85 Thurber Ave.
Brockton, MA 02407
I am a 17-year-old female with a case of Arthrogryposis
Multiplex Congenita. All four of my limbs are involved. I was born
in Stoughton, MA on October 21, 1977, and was immediately rushed
to the Floating Hospital in Boston, MA, where I was diagnosed as
having AMC. When I was two days old, I became the patient of Dr.
Zimbler, who is an Orthopedic doctor. He put casts on both my arms
and legs. I stayed in the hospital for about a month and a half.
I got my first electric wheelchair when I was three years old. In
my life I have had three wheelchairs and about twenty operations.
My latest operation was in 1992 on my back. I had a spinal fusion
and, let me tell you, there are some advantages and some disadvantages
of having this done, but I still think it was worth it. The thing
that has been most difficult in my life has been school. The years
from preschool to junior high were the best. Once I reached high
school, everything went down hill, because the teachers did not
understand my disabilities. During my freshman year I transferred
to the Massachusetts Hospital School in Canton, MA, which is a school
for the physically challenged. You can live there or be a day student
like I am. M.H.S. provides P.T., O.T., Speech, Computer lessons
and a lot more. I have been getting P.T. and O.T. since I started
school. I would like to hear from kids or adults with AMC, or parents
who have kids with AMC, and if you have any questions, I will try
to answer them.
and Kim Oliphant
W.Bothell, WA 98021
Thank you AVENUES! For the past two years our
family has been "graced" with this wonderful newsletter
that has given us so much knowledge, information and hope for our
Nicole is now 2 1/2 years old. When she was born
her legs were contracted into her crotch, her arms appeared to be
stuck to her sides and she had some scoliosis. I remember thinking
her fingers looked like spaghetti. Nicole was taken, by Cesarean,
four weeks early. This was due to "problems'' detected through
ultrasound. Had I not been so persistent in finding out the sex
of our baby (she was breech and previous attempts were unsuccessful)
this final ultrasound would probably not have been done. I still
say it was a Mother/Daughter connection! This last ultrasound lasted
three hours and I laid there lifeless while three doctors viewed
but wouldn't tell me a thing! My worst fears were that of "not
knowing". I was then told that my baby "girl" may
not survive birth, as a "worse case" sinario, and as a
"best case" she would be born with club feet. The doctors
truly did not know what they were facing. In the ultrasound they
could not see one of her legs and one of her arms. For the next
two days Jim and I sat lifeless on 'the couch as we awaited the
planned birth. It was the longest two days of our lives. I did not
look at our daughter for the first day of her life then finally
my husband forced me to go into the intensive care unit to see her.
I was so scared of what I would see. When I got in there all I saw
was my "beautiful little girl". I knew at that moment
that despite her special needs she was my little girl and our love
for her was unconditional. We were told that due to further complications
with the umbilical cord, in utero, that Nicole would not have survived
a full term pregnancy.
Well it is now 2 1/2 years later and guess what...we
survived! Since Nicole's diagnosis at two weeks of Arthrogryposis/Amyoplasia
(affecting both arms and legs), we were fortunate to have overwhelming
help and support from our family and friends. A muscle biopsy was
done at 2 1/2 weeks with no muscle present in upper thigh. Nicole
received fat deposits in place of muscle in both her arms and legs.
However, now, I'm not so sure she doesn't have some muscle.
In the issues of AVENUES we have received, not
much is mentioned about the Amyoplasia "type" of arthrogryposis.
I was led to believe that this was a very common type? We would
be very interested in hearing from (via letter or telephone) anyone,
younger or older, that is familiar with Amyoplasia. Most of all
we are interested in success stories as well as the more challenging
areas. Do most of these children walk? (Nicole's doctor at Children's
Hospital in Seattle said she would walk on her own someday) When?
Currently Nicole can sit up independently and can roll over. She
can scoot on her back. She is working on a self feeding device which
is great for gaining independence. She can grasp between her fingers
and throw small objects. Nicole's cognitive is above average. She
can count by herself to fifteen, knows all her colors and speaks
full sentences. We are very proud of her! She receives physical
therapy three times a week, hydrotherapy once a week and attends
school two times a week. So far Nicole has had releases on both
heels and abductor and flexor releases on her hips (her legs are
in the hip sockets). She has a battery powered buggy that was specially
adapted for her. She drives around the neighborhood like "The
Queen!" All of the other kids want to ride it! We also just
received a Prone Stander which she will stand in every day to strengthen
her hips, etc. and prepare her for leg braces. She is scheduled
to have knee releases at the end of May, 1995. What surgeries have
been most successful?
Nicole's dad is very talented in making special
adaptive devices for her. He can pretty much make anything she needs.
So far he has made a corner chair/table, floor scooter with wheels,
and a bath tub support. She is very lucky to have such a great daddy!
Now that you know Nicole's life story...we would
love to hear from you!
R. Rivera, M.D.
19 Cedar St.
Midland Park, NJ 07432
Office 201-489-9160 ext. 119
I am sorry I never wrote back to you since you
kindly sent me a package to my address in Peru back in early 1990
with information about AMC which included a list of physicians interested
in the cause and treatment of this syndrome. My family and I moved
from Peru to the U.S. after I got a job in a pharmaceutical company
and we settled our home in New Jersey on August, 1990.
Let me summarize what has happened with my daughter
Andrea since then. First, I took Andrea to Dr. Jay, Director of
the Arthrogryposis Clinic at the DuPont Institute, Wilmington, DE.
He had his reservations regarding the diagnosis, and since her case
was not surgical, he made a transferal consultation to the geneticist,
Dr. Scott, at the same institution. After the third trip, we declined
to take her to the institute again since we were concerned with
their quality of care delivery. It was not a good experience. Thereafter,
I looked on your list for other physicians that were around my area:
Dr. McKay in Washington, D.C. had moved his residency to Louisiana;
Dr. Griffin in Baltimore was retired. Two and a half years ago,
I fruitlessly tried to set an appointment with Dr. Hall in Vancouver,
Canada; they told me that Andrea's clinical case needs to be seen
by another doctor prior to Dr. Hall's appraisal.
Andrea is 6 1/2 years old, she is walking and does
some running even though she has moderate range of motion limitations
in the pelvic girdle and also in the scapulo-humeral girdle and
severe contractures in three fingers of both hands. Andrea has mild
mental delay comparing with other children of her age but she is
very sociable. She is continuously having O.T., P.T. and speech
therapy, this last in English but we'll keep her bilingualism since
we speak Spanish at home. Andrea attended an early child educational
program in the community, including in the summer time and currently,
she is going to kindergarten at the same school that my other children
go but she is in a special education class. She is being evaluated
by Dr. Konisberger, Neurologist from the Medical and Dentistry School
of NJ at Newark and by Dr. Roye, Orthopedist from the Baby's Hospital
of Columbia Presbyterian College of Physicians and Surgeons, New
We have been looking for the final diagnosis of
Andrea's condition and with a total uncertainty of what is going
to be her long term outcome. The diagnosis of Andrea's clinical
entity is still a "mystery" for her physicians but as
they say: the good thing is that she is functional and her improvement
has not stopped until now. However, not a long time ago, Dr. Roye
concurred with the original diagnosis of arthrogryposis; thus, I
decided to re-start my communication with AVENUES.
68 Apple Dr.
Exton, PA 19341
We still continue to go to DuPont for the arthrogryposis
clinic, but it is now becoming more apparent that Taylor has a very
different form of the disease than any of the children we meet.
Despite all this he is doing extremely well and we are very pleased
with all his therapists. Taylor really seems to know that he has
to work hard and he has an unbelievable way of adapting to do whatever
12168 Chestnut Crescent
Pitt Meadows, B.C.V3Y 2C6
On May 2, 1993, our son Scott was born. In addition
to having severe hydrocephalus, Scott was also diagnosed as visually
impaired and having arthrogryposis in his hands and wrists. Scott
received his first shunt when he was five days old. It's blocked
twice since then for which Scott has undergone two emergency surgeries.
Scott, unfortunately, experienced a haematoma following his second
shunt revision which left his right side limp. Scott has regained
some strength and use of his right arm and leg but it's taken Scott
ten months to begin to move his right fingers again.
Scott's body's been terribly weakened by the number
of surgeries and complications he's faced in his first year of life.
Despite this, Scott is now able to sit on his own for twenty minutes,
twice daily, with supervision. This is a huge accomplishment for
Scott with his shoulders, upper arms, and trunk being his weakest
areas. Whether these weaknesses have resulted from Scott having
hydrocephalus or arthrogryposis is debatable. Scott's hands have
been fisted since birth. Daily splinting, stretching and massage
have helped tremendously to open up Scott's hands. Scott's thumbs
lie flat against his palms and his index fingers curl under more
tightly than his other fingers. This had made feeding and grasping
toys very challenging for Scott but not impossible. Scott prefers
to use his last two fingers and palms to grasp as these fingers
are only mildly affected by arthrogryposis.
Scott is lucky to have a very dedicated team (physio,
0. T. and speech therapists) helping him to use his thumb and index
fingers, to move his body and to verbalize. Scott's been fitted
for his first standing frame. Orthotics are being made for this
as Scott's feet may now, too, be affected to some degree by arthrogryposis.
Scott now smiles readily. He giggled hysterically at me last night
as I danced around the kitchen for him. Scott loves the vibrations
he feels through the floor while sitting in his exersaucer. Scott
also babbles away when travelling in our back pack.
There have been many rewards for us in working
so diligently with Scott in his first twenty months of life.
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From AMC Support
Co-Founder of CAST
365 Fiddler's Green Rd. S.
The Canadian Arthrogryposis Support Team (CAST)
has growing membership located all across Canada. This largely due
to the fact of AVENUES' existence. AVENUES provides possible link-ups
between parents and support groups not only in the U.S. but around
the globe. I commend AVENUES for printing all the international
support groups in their January newsletter.
As you realize the rarity of this condition, it
is very important the parents and support groups contact each other
to share all the information that is available on arthrogryposis.
If we all work together, we can serve the people a little better.
To give an example of how this works, I received
a letter from the coordinator of a parent-to-parent group that is
located in the U.S. She was requesting information on arthrogryposis
that is written in Spanish. I was not able to supply her with anything
but an address. It was AVENUES who had their pamphlet "What
is Arthrogryposis" translated into Spanish. Now these Spanish-speaking
parents can get some information.
Keep up the good work AVENUES, TAG, TAAG, CAST,
TAG-NZ, IGA, GISA, and all the other support groups out there.
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From the Medical
Tel: 02404/7010 + 7012
I'm a physical therapist in an institute for prevention
and rehabilitation. I'm specialized in neuro-pediatric and orthopedic
therapy and this is the reason I have contacted you.
In the last few years I was concentrated in doing
treatments with children with the diagnosis of AMC, and in this
case, the main part of the therapy was the concept of Vojta-therapy.
This therapy is a neurophysiological course of treatment which through
the proprioceptive stimulation of certain "triggers" spreads
through the coordination complex via defined chains of muscles and
builds up the muscles through isometric resistance.
With an early diagnosis, the parents can be integrated
in the therapy through a co-operation with the clinic or GP to such
an extent that they can lay foundations for the contracture therapy
and/or coordination complex in a responsible manner and thus carry
out preparatory work for the operation and help avoid secondary
If you are interested in exchanging information,
please contact me at my above address. Since I am residing in the
States for several times a year, I could arrange to meet with you.
California Children's Services
3031 E. 18th St.
Oakland, CA 94601
I work in an outpatient therapy unit which serves
children with physical disabilities, a majority of which are chronic
in nature. In the past ten years we have treated two or three children
with Arthrogryposis. Within the last 6 months, 5 children have been
referred to us with this diagnosis, three of which are under one
We have some information on Arthrogryposis Multiplex
Congenita but are interested in learning more regarding theories
of etiology, types ( I currently have a child diagnosed with Type
II B), and treatment/splinting techniques.
M. Strathy, M.D.
Gillette Children's Hospital
200 East University Ave.
St. Paul, MN 55101
...I would like to let you know that we have been
treating patients with arthrogryposis essentially since the conception
of Gillette Children's Hospital in St. Paul, Minnesota. Gillette
Children's Hospital has been in existence for almost 100 years,
having been founded in 1897. Our arthrogryposis patients are usually
seen in the Growth and Development Clinic which meets weekly. This
clinic is staffed by Dr. Lowell D. Lutter and myself.
We are both orthopedic surgeons. We are complemented
by a full staff of physical medicine and physical therapy personnel,
as well as a full bracing, seating and orthotic laboratory.
L. Belaire, P.T.
Pathway School for Exceptional Children
1429 West Grand River Ave.
Howell, MI 48843
I am a school physical therapist who works with
a third grade girl with AMC. This student wishes very much to ride
a tricycle, i.e. a trike that is like a standard trike, not one
of those styles that is low to the ground.
I have tried her on a Rifton trike (the smallest
they make), and she is actually able to pedal the trike, but not
without deviating the front wheel from side to side. Because of
the lack of upper extremity function, she is not able to steer the
trike. She will try the next largest trike soon.
Do you have any information on trikes that have
been adapted for AMC kids which permit steering and pedaling? If
so, please send me sources or ideas.
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Lekotek Toy Resource Helpline
The toll-free Lekotek Toy Resource Helpline was created to provide
individualized assistance in selecting appropriate toys and play
materials for children with disabilities. For more than fifteen
years, Lekotek has provided play-based programs for children with
disabilities at 66 centers in 19 states and Puerto Rico. Using the
Helpline, parents, family members and friends of children with disabilities
who are not within reach of a Lekotek center, can receive individual
consultation on toys and play over the phone.
Individuals can reach the Helpline by calling 800-366-PLAY
(TTY 708-328-0001) Monday through Friday from 9:00 am to 4:00 pm
(Central Time). A certified Lekotek Leader will be available to
answer questions on toys and creative play ideas for children with
For more information, please contact the National
Lekotek Center at 800-366-PLAY.
Book About Children With Special Needs
I am writing a book about children and youth with special needs
from the ages of seven to eighteen. I am a social worker, writer
and mother of three children. My third child was diagnosed with
cerebral palsy. The research for this book began as I searched for
information to help our family. I now hope to include the ideas,
thoughts and feelings of others living with special needs.
Through your participation, you will have the chance
to contribute to a book which can help others. If you would like
to be included, please write or call. I would love to hear from
Write or call to ask questions or to receive a
Cathy Binstock MSW-ACP
5300 N. Braeswood Blvd.
Houston, TX 77096
Quite often people with disabilities, including those in wheelchairs,
have difficulty buying clothes off the rack. Simplicity Pattern
Company and Drexel Design Press have released a book covering functional
and fashionable clothing for people with disabilities.
Design Without Limits offers not only ideas on
clothing but also fashion tips. The book costs $19.95 from Simplicity
Patterns, P.O. Box 109, Revesby NSW 2122.
From Open Line, October, 1992
The Ski Doctor
We at Ski Doctor Designs and M.G.T. Healthcare are proud
to announce the introduction of our revolutionary Shockshaft F-1
forearm crutch and snow skiing outrigger. If you have any questions
or comments please call or fax us anytime. Ski Doctor Designs /
M.G.T. Healthcare Products, 3951 Performance Dr. #C, Sacramento,
CA 95838, phone 916-646-3352, fax 916-921-1643.
How to File Complaints
Complaints about violations of title I (employment) by
units of State and local government or by private employers should
be filed with the Equal Employment Opportunity Commission. Call
800-699-4000 for the field office in your area.
Complaints about violations of title II by units of State
and local government should be filed with:
U.S. Department of Justice
Civil Rights Division
Coordination and Review Section
P.O. Box 66118
Washington, D.C. 20035-6118
Complaints about violations of title III by public accommodations
and commercial facilities should be filed with:
U.S. Department of Justice
Civil Rights Division
Public Access Section
P.O. Box 66738
Washington, D.C. 20035-6738
From Rehabilitation Gazette, August, 1994
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Please add the following names to the list of young
people with AMC who would like to correspond with others:
P.O Box 386
Crane, TX 79731-0396
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