vol. XVI, no.1, January, 1995
Two new clinics focusing on Arthrogryposis have
recently been established. The University of Michigan Mott
Children's Hospital, located in AnnArbor, Michigan, began
an Arthrogryposis clinic in December, 1993. The clinic is staffed
by Virginia Nelson, M.D. (clinic director), Randy Loder, M.D. from
pediatric orthopaedic surgery and by physical and occupational therapists
from Mott Children's Hospital. The clinic welcomes people of any
age and provides comprehensive coordinated care. To schedule an
appointment, call 313-936-7185. Dr. Nelson may be reached at 313-936-7200.
The Shriner's Hospital in Minneapolis,
Minnesota, has begun scheduling an Arthrogryposis clinic
four times a year. The coordinator is Kathy Engstrom, RN, who may
be reached at 612-335-5320. The clinic is staffed by Dr. Ann Van
Heest, an orthopedic surgeon specializing in the upper extremities;
Dr. Lyle Johnson, who specializes in surgery of the lower extremities;
Wendy Tomhave, occupational therapist; and Mary Strub, physical
In addition to these new clinics, Arthrogryposis
clinics continue to be held at the following locations:
Children's Hospital and Medical Center
Lyn Sap, Rehab Nurse Clinician
4800 Sand Point Way N. E.
Seattle, WA. 98105-0371
A.I. DuPont Institute
Dr. S. Jayakumar, Director
P.O. Box 269
Wilmington, DE 19899
University of New Mexico
Carrie Tingley Hospital
Judy Larson, Coordinator
1127 University Blvd., NE
Albuquerque, NM 87102
[back to top]
By Gabriele Hendrichs
Last October I bought a new computer. With this
computer I received a free one month's subscription to an online
service. There are several online services. Online services offer
a variety of services from buying your airline ticket to getting
a credit history on oneself. These services offer Internet access,
which allows the user to write to anyone in the world that has an
Internet address; and e-mail, which is electronic mail.
As soon as I had subscribed to an online service,
I looked for the DISABILITIES Bulletin Board and posted a message
that asked for information on Arthrogryposis Multiplex Congenita.
To my surprise, a few days later I received a reply. Mrs. Jody Johnson
and her daughter, Joyce Johnson Eberl, were extremely helpful. With
their help I received information about this national support group
A few months ago an interest was shown in starting
an online support group. A group has been formed on America Online
and there are now a total of seventeen people on the mailing list
from different online services or the Internet.
Our first meeting was on September 19th of this
year. It turned out to be great, eight people showed up. We talked
about subjects ranging from available doctors for adults to the
age we started walking to what exercises were done during physical
therapy when we were young. Our second meeting on October 17th was
also a great success; eight people showed up. We had some parents
of children with AMC show up and we talked a little about how it
feels to be someone with AMC and how it felt growing up and going
to school. Our meetings occur every third Monday of the Month at
9pm EST in a private room on America Online.
If you would like to communicate via the Internet
or if you have an account with an online service, here is a list
of the people involved in the group and/or have an Internet address.
Their full name will be followed by their screen name or e-mail
Joyce Johnson Eberl - nksj65a
Dr. Joseph Capell - 73157,660
Steve Sheridan - ccct44a
Gaby Hendrichs - 75327,1525
Gaby Hendrichs - GabyH
Thomas Pippitt - Tompip
Joyce Johnson Eberl - JimJody
Cathy Haburay - CathyH169
Bill Baughn - BBaughn
Matt - Timebom1
Helen Coles - HannaH524
Cheri Brown - CheriBPT
Bill Micklitz - Wild67Bill
Beth - Bethann960
Wynelle Carson - WynelleC2
Julie Perez - JulieSam
Barbara Steltz - BarbaraS75
Jeff Roberts - Bgmunch
Sharon Sigmon - SS815
The following two people also have a separate Internet
Steve Sheridan - firstname.lastname@example.org
Romeo Capell - RACAPELL@ucdavis.edu
If you want to communicate with people on Prodigy
via the Internet , use their screen name followed by "@prodigy.com."
To communicate with people on CompuServe, use their screen name
followed by @CompuServe.com," but change the comma to a period;
and on America Online use their screen name followed by "aol.com."
If you want to information regarding subscription
to America Online, please contact me at (407)957-2271 or, through
the Internet, you can send it to GabyH@aol.com.
Come and join an exciting new way of communicating and sharing ideas.
[back to top]
Assocation of Canada Offers Support for Arthrogryposis
The Canadian Arthrogryposis Support Group (CAST)
reports in their Spring 1994 Newsletter that MDA of Canada (MDAC)
has approved Arthrogryposis as one of the more than 40 neuromuscular
disorders covered by their organization. MDAC funds research on
neuromuscular disorders and provides support services to individuals
and families such as funding for transportation costs associated
with medical appointments and assistance with costs for various
prescribed medical items.
CAST has been designated as an official MDAC Support
Group. To receive the CAST newsletter write to:
c/o Muscular Dystrophy Association of
150 Eglinton Avenue East, Suite 401
Toronto, ON M4P 1E8
[back to top]
of Avenues Pamphlet Available
Thanks to Berta, Yvonne and Betty at United Cerebral
Palsy of Miami, we now have a Spanish translation of the pamphlet,
"What is Arthrogryposis?" The translation is available
for a donation of $1.00.
[back to top]
By Melissa Schmidt
Melissa Schmidt, 16 year-old daughter of Jim and
Mary Anne Schmidt, thinks her whole life may have changed and she
hopes it's for the better. Melissa has recently become one of the
few recipients of a Canine Companion. Canine Companions for Independence
(CCI) is an organization that matched Melissa with service dog,
Ungar, a golden retriever and yellow lab cross.
"The cross makes for a better temperament,"
Schmidt said, "And he's the calmest dog I've ever seen - except
when he's given the command 'Release'." Out of the forty-plus
commands that Ungar knows, this is his favorite. This lets him know
he's off duty and he gets to run around and be a dog.
Ungar's choice of pastimes include chasing a black
rubber toy called a kong, chewing the kong, and gazing at Melissa's
pet lovebird, Mistletoe.
"I give him the command 'Leave it' and he's
supposed to ignore Mistletoe. It's something that's hard for even
Service dogs like Ungar are provided for the physically
disabled to help make up for some of their limitations. Ungar can
pick up something that Melissa may have dropped, turn on and off
light switches, pull open doors, and push buttons to open automatic
doors. Melissa hopes to train Ungar to do customized things that
are particularly for her - perhaps to help steady her walking on
uneven ground. Ungar barks, gives kisses, shakes hands, and toilets
(!), each with a spoken command.
And what does Ungar think of his new home?
"It's great," he says, "I just wish
Melissa's sisters were allowed to pet me all the time."
For more information about Canine Companions, write
Canine Companions for Independence
P.O. Box 446
Santa Rosa, CA 95402-0446
[back to top]
University Dept. Anesthesia
St. James Hospital, Leeds
Reprinted from TAG's Summer, 1994 newsletter
Although anaethesia in AMC patients is poorly
documented, of the few reported cases, a significant number have
recorded increase in body temperature. This has led to the assumption
that AMC is associated with the condition malignant-hyperthermia
(MH). Because of this possible association, we have been asked to
screen two families with children with AMC, who have experienced
a hypermetabolic response during anaesthesia. This would include
such features as an increased temperature and heat rate. In neither
family did we feel there was any evidence to support the diagnosis
We concluded that the hypermetabolic response
that is sometimes - but not always - seen in AMC children induced
by anaesthesia is distinct from that caused by MH. In particular,
the response in AMC will respond to active cooling alone, whereas
MH requires cessation of triggering agents, dantrolene, cooling
and aggressive correction of metabolic derangements. The response
seen in AMC seems to be independent of the type of anaesthetic agents
used. In MH there are definite 'trigger' drugs and 'safe' drugs.
Therefore any anaesthetist caring for a patient
with AMC should anticipate a hypermetabolic reaction, use appropriate
monitoring for its detection and have cooling methods available.
Reference: Hopkins PM, Ellis FR and Halsall PJ.
"Hypermetabolism in arthrogryposis multiplex congenita."
Anaesthesia 1991; 41: 374-75.
[back to top]
Vitamin B6 and Post
In the Polio Network News, Summer 1994, Charlotte
Gollobin, consulting nutritionist, describes the case of a sixty-one
year old male who was suffering from pain associated with post-polio
syndrome. When treated with 100mg of vitamin B6 each day, the pain
subsided. The subject discontinued use of the vitamin supplement
on several occasions, and each time the pain returned.
Gollobin writes: "Vitamin B6 is a water-soluble
vitamin. Alone and in conjunction with vitamin B2 it can provide
beneficial effects on carpal tunnel syndrome, a painful neuropathy
which affects many Post Polio Syndrome (PPS) survivors. There are
numerous referneces in the literature to this effect. B6 is involved
in neuromuscular function and protein metabolism...Neuromuscualr
function is a major concern for PPS survivors...B6 is increased
during exercise which has been shown during a recent conference
to be quite beneficial to PPS survivors. At this same conference,
it was suggested that the female sex is a risk factor for PPS. Estrogen
depletes B6 and may, therefore, add to symptoms over time. There
are many reasons to study the effects of vitamin B6 on PPS patients.
We hope that controlled research studies will be undertaken to determine
these effects in a scientific way."
[Editor's Note: There are some similarities in
PPS and the symptoms experienced by many adults with AMC.]
[back to top]
From Families Around
and Marge Jaeb
5626 Timber Trace
San Antonio, TX
...I'm hoping we can find someone in Texas who
has a clue on arthrogryposis. I'm especially interested in finding
someone who can deal with contractures in the wrists and knees.
Nathan's are getting pretty severe. All the doctors we have been
to have the attitude that we should just leave everything alone!
Nathan in six years old (born 1/22/88). His arthrogryposis
is severe in the upper extremities and moderate in the lower. He
has no other health problems and he has only had one surgery - tendon
releases in both feet. He can walk and skip, but can't run, due
to lack of bend and weakness in his right leg. He has no grip in
his hands, but can feed himself and write with special tools. My
suggestion for AVENUES is to gather tips from parents on how they
dealt with different problems. Here are several things we tried
that worked well:
Since Nathan couldn't use his hands, we were
very anxious for him to learn to drink with a straw. We taught
him by giving him a candy cane to suck, then substituting a straw.
It took about one minute for him to get the idea!
Also, since he couldn't lift his arms, I attached
an infant's mobile (with the toys removed) to the back of his
high chair - then hung two pieces of elastic down from it. With
his hands in the loops of elastic, he was able to move them up
and down - great therapy and many more play possibilities.
Nathan had very weak hip extensor muscles - in
fact, the doctor didn't think he had any, and thought he would
need full leg braces to stand upright. But when he was able to
sit up by himself, we started teaching him to use a ride-on toy.
He couldn't push it at all by himself for the first few weeks,
but he gradually learned. It strengthened those "non-existent"
muscles, enough that he can walk without any leg braces.
You get the idea - I'm sure other parents have
"tricks" like the ones we've discovered. It would be a
help to parents of younger children with AMC if they had access
to this information.
We are especially interested in finding out about
surgeries for release of contractures in the wrists or knees. If
anyone had any information on possible procedures, please write
Rt. 4 Box 304-L
Ellijay, GA 30540
I want to thank all who called and wrote with
self-help skill ideas for Kelly. I would especially like to thank
Helyn Strom-Nemiksen and Leslie Nakala for taking the time to call.
Your ideas have been a big help. Kelly is doing more and more by
herself and we are very proud of her. Thank you to everyone.
909 28th St. SE Apt.1
Cedar Rapids, IA 52403
I recently got your publication from my son Nicolas'
physical therapist. Nicolas was diagnosed with arthrogryposis when
he was a day old. He was born on November 2, 1993. I'd like to share
a little bit about my son.
After three orthopedic specialists had checked
Nicholas out, I was told he would never crawl or walk. He had club
feet, unilaterally dislocated hips, and AMC. Nicolas' problem areas
are basically his left shoulder and also from his hips down...
Luckily, Nicolas was accepted in the Shriner's
Hospitals in Minnesota. I felt at home there and also felt that
Nicolas would get the treatment he needed. His specialist suggested
therapy and will be doing surgery on his hips and maybe his knees.
They also placed him in AFO's (the Dennis Brown bar had started
making Nicolas' knees bow in the middle). He will be in a Parapodium
Nicolas is now nine months old, and as always,
the true miracle of my life. These children are a rare gift of God.
I would like to share my experiences and would like to know more
about other people's. I also would like to know of any specialized
doctors in this field, research being done, or treatments that might
If I can help anyone, please add my name to the
44 Pine Oaks M.H.P.
Burton, SC 29902
Hello Everyone! I am 32 years old and was diagnosed
with AMC at birth. Since then, I have had approximately 25 operations,
everything from ankle fusion to hip replacement. According to the
doctors, I need most of my joints replaced. The way I look at it,
I will be bionic by the time I'm 40. I have been experiencing a
lot of pain in my joints due to deterioration. I have found the
best doctor for me to see. He is a ruemitologist. The orthopedic
doctors can not at this time operate because I have a fifteen-month-old
son, and I still need to be able to pick him up from time to time.
My shoulders are the first problem to take care of, but until my
son can do more on his own, I am stuck! I do have the best helpers
in the world who show their support for me in everything that they
can do for me. This is my twelve year old daughter, Stephanie, and
my husband, Jim! Even Matthew helps me! It's funny how both my children
adapted to AMC, they both did everything early to accommodate my
disease! So for all of you that want children and have AMC, don't
worry you will be just fine. They seem to know from the time of
conception their purpose in life when it comes to AMC.
I would also like to say that for you parents
with children that have AMC , you are very special and without your
love and support we would never become the special people that we
are! My mother is my best friend and has always been. She let me
try everything that I wanted to. She never told me that I couldn't
do something. She let me make the choice! That's why today I always
say, "I'll try anything once; if I can't do it, I'll try it
& Migdalia Castro
301 N.E. 19th Ave.
Cape Coral, FL 33909
I am writing to you regarding my son, Rocky. Rocky
is six and a half years old. He was diagnosed with arthrogryposis
at birth. He has a spunky personality, is alert, intelligent and
quite verbal. He will be entering first grade in September. Rocky
uses a walker with four wheels for short distance walking, and has
a wheelchair for long distances. Rocky has accomplished sixty steps
all on his own.
We are presently not involved in any support groups
of any kind. Our support system has been our family. Rocky is my
first born. I also have a two-year-old son, Ian. Ian was born with
no medical problems.
Rocky is growing older and bigger and situations
continue to arise which we don't know how to resolve or work through.
We would like to be involved in a support group for ideas, support
and resources. We have run into several problems regarding SSI,
medicaid, therapy and transportation.
Please respond to our letter. Your response is
83 West Broad St.
Hopewell, NJ 08525
I wanted to share an idea that we used very successfully
when our son Graham was so often in either a body cast or in leg
casts. We bought a "crawlagator" (bellyboard) from the
toy store that looked like a pear-shaped skateboard with three wheels
on the bottom. For the whole first year Graham's legs were in casts
so we would lay Graham on his stomach on the board and push him
around gently on the kitchen floor. It gave him a different perspective
from always lying on his back or sitting straight up and he loved
it. His hands were badly bent down to the wrists at birth so I would
remove his hand splints and it wasn't long before he was scooting
himself around using his hands. I showed him how to lay his hands
down flat on the floor to push off and I think propelling himself
around the floor helped a great deal to flatten and strengthen his
hands. Eventually, we took up all the rugs and he could make his
way everywhere. After he outgrew the crawlagator, we built a simple
board that was bigger to accommodate his spica cast and he loved
racing around the house chasing the dog or playing with his cars.
If you have any questions please call or write.
3609 James Dr.
Metairie, LA 70003
During the recent year, a close friend posed a
question my way: "Why did God choose me to bear the burden
of my handicap?" He wondered what made me capable of facing
life in the manner in which I do.
My response: simple. I rarely put much thought
to it. I try not to view this as a burden. Just a fact. Some have
different color hair. Some, no hair. People are tall and short,
fat and thin. Some have arms and legs sculptured with muscular beauty,
quickly identifiable as such, too. I, however, was given arms and
legs that lean more toward the Picasso-like abstracts...
The last time I wrote, I was working in the sports
information office at the University of Southwestern Louisiana,
traveling with the Ragin' Cajun basketball team throughout the country.
Midcourt, press row seating for collegiate basketball...
In December 1992, I left USL to join the staff
of the Boys & Girls Clubs of Acadiana, a wonderful job working
with kids. They brought smiles to my face that no other career placement
could match. The place was fun. The time was never a factor. The
administrators, though, were another item. Preachings of the good
we'd do for kids was the M.O., yet they made sure to avoid the kids
at all costs. I was forced from my role after undergoing a total
left hip replacement. They even attempted to delay this surgery
for their convenience and risk my walking ability for the remainder
of my life. I didn't return to work within their time frame, so
I was fired.
Since that time, I have moved back to the New
Orleans area and have taken on a multitude of part-time jobs that
include announcing baseball and keeping stats for basketball for
Tulane; assisting the administration of and officiating games (yes,
even with the hip replacement) for the city's Catholic School Athletic
Leagues; working for my father on the Mississippi River. Eventually
full-time work with benefits and all that lure will turn its path
back into my life. I don't think that will happen, I know so. I,
along with the arthrogryposis that affected my arms, hands, legs,
hips and feet, turned 32 in mid-July. My hip reached age one in
late July. I humor all of it. I approach life in a manner that fits
me. It's right for me. It may not be for someone else. I read my
copies of AVENUES timelessly, and I'm concerned for all of you -the
parents more than the patients because I know that a patient can
overcome. It's so much like baseball. The mental part is much more
difficult that the physical challenge.
Maybe the answer rests within simplicity. Have
a strong heart, a good one that leaves bitterness aside, and the
physical strengths will appear.
By the way, my address and phone have changed, and any one is invited,
make that urged, to contact me.
& Eric Viogt
4166 Ivanhoe Dr.
Monroeville, PA 15146
Back in February, we wrote you about the happy
news of our expected baby. We asked to correspond with any women
with Arthrogryposis who had children. We were thrilled to see that
our letter was not only printed but was the first one listed! Diane's
parents didn't know that we had written and were pleasantly surprised
when they read their copy.
Tragically, our son, Eric Matthew, was stillborn
on the first of August, just one week after we received our copy
of AVENUES and two and a half weeks before he was due. Six days
earlier, at the doctor's office, his heartbeat was strong and steady,
pounding loudly through the fetal heartbeat microphone. We had an
autopsy performed, but it revealed nothing other than a low birthweight.
We are still mourning the loss of our son, and
we probably will for quite some time to come. To those of you who
responded to our first letter (including one resourceful woman who
managed to get our phone number when we forgot to include it in
our letter), we thank you and we are sorry that we didn't reply
to you sooner.
Our loving family members and friends have been
very supportive through all of this, and with the monetary gifts
we received, we had enough to cover all of little Eric's funeral
expenses and a bit more. We decided to give the remainder of the
money we received to AVENUES.
One thing we would like to do with the help of
AVENUES, is to compile a list of OB doctors who have treated pregnant
women with arthrogryposis. From the letters we received, no OB had
any experience or source of information concerning arthrogryposis
before each of the women who responded to us got pregnant. So we
are asking all woman with arthrogryposis who have ever been pregnant
to please check with your OB for his/her permission and then contact
us with his/her name, address, and phone number. We hope that this
list will be of some help for anyone else (including ourselves)
who becomes pregnant in the future.
[Editor's Note: We wish to express our thanks to
the family of Eric P. Hoffman and his fellow workers in the laboratory
of E. Hoffman at the University of Pennsylvania who also sent a
generous donation to AVENUES in memory of Eric Matthew Voight.]
68 Apple Dr.
Exton, PA 19341
...Taylor (12-22-92) is now almost two and about
a year ago the doctors started noticing that he was not displaying
typical development for kids with arthrogryposis...What is different
about Taylor is that he has a "density" to his muscles
or stiffness which seems to involve all his connective tissue...He
seems to be stuck in mid-line. Even his eyes are tight and he has
been diagnosed with congenital fibrosis syndrome in his eyes so
that he can't really move them from side to side or up and down...They
did a muscle biopsy and found that although the muscle tissue looked
normal, the connective tissue was thick and dense all over.
So far they say there are no other known cases
like Taylor's. Dr. Scott (our geneticist) is working with us to
see if we can find anyone with a similar diagnosis or clinical findings.
We would love to know what Taylor will be facing for the rest of
his life... If you've heard of anyone similar to Taylor, please
let us know.
We still continue to go to duPont for Arthrogryposis
Clinic...he is doing extremely well and we are very pleased with
all his therapists...
130 North 16th St.
Chesterton, IN 46304
My son, Billy, was diagnosed with arthrogryposis
shortly after his birth in 1988. He has scoliosis, was born with
club feet, cleft palate and was unable to eat except through a tube
in his stomach up until a few years ago. He's had numerous operations
and the list of health problems goes on and on. He is now six years
old and is unable to walk as of yet.
My family has little information on this disease
and the doctors also have little information. If you could send
any information at all about this disease my family and I would
be very grateful. Also, if I can give you any information on my
son's condition, I would be glad to help you.
and John Hunt
1125 Dorset Dr.
West Chester, PA 19382
Our son is fifteen and had been a patient at the
Alfred I. DuPont Institute in Wilmington all these years. He had
the Ilizarov procedure done on both feet and one leg in June '92.
Anyone in need of information about this, please contact me.
and Donna Rutkowski
1432 Conway Drive
Swarthmore, PA 19081
Our daughter Christine was born on May 5, 1979
and was diagnosed with arthrogryposis affecting her upper and lower
extremities. We have been receiving AVENUES since she was an infant,
which has been a great source of support and information to us.
In August we took Christine to her orthopedic hand specialist for
a routine checkup. Her doctor has suggested some possible surgeries
that may make Christine more functional...The first thing...would
be to fuse her shoulder; then a muscle bicep and tricep transfer
on the upper arm; and finally, a possible wrist fusion...Before
we go forward with any of these we would be very interested in hearing
from any families who might have had one or more or these done.
Christine's last surgery was in 1989 on both her
feet. She had some problems after the surgery with being sick. The
anesthesiologist said we should not let her have general anesthesia
again - that she should have a spinal. This greatly concerns us.
Has anyone had any problems with anesthesia? Chrissy has had many
operations in the past with no problems. And I believe they would
need to use a general for all arm surgeries...
Broderick and Stanley Perlman
417 Macbride Rd.
Iowa City, IA 52246
Claire Perlman, born with arthrogryposis in June
'91, has a new little brother, David. Things are a little hectic
around here now. Does anyone know of a swing that schools or municipal
playgrounds can buy that will support a 3-6-year-old safely? Claire
uses the Little Tykes yellow swings in our backyard but when she
starts school she will want a more grown-up swing. With her knee
and hip contractures she needs a front loading swing. Any suggestions?
Thanks for all the work you do.
and JoAnn DuBois
P.O. Box 92
Sharon, CT 06069-0092
Thank you so much for letting us know that we
are not alone in dealing with arthrogryposis. Our son, Jesse, was
born 8-24-91. He will be three next month and has come such a long
way. Only his upper extremities were affected, but he has much trouble
eating on his own, toileting, etc. Nonetheless, Jesse never stops
smiling. He is very determined and is not going to let anything
stand in his way.
Although my husband and myself were not sure how
we were going to handle Jesse's disability at first, Jesse has given
us nothing but joy. We couldn't imagine life without him. AVENUES
has helped us in knowing that we are not alone. Thank you!
and Galina Fedorenko
8600 18th Ave. W. #D-302
Everett, WA 98208
Our daughter Liliya was born 11-19-92 and was
diagnosed with arthrogryposis. Initially she had very limited use
of both of her arms. She has shown remarkable improvement since
that time, however....She is able to put on her own shoes, feed
herself and turn pages on her books. Her left arm and had are much
more useful to her than her right but she uses both and is very
Liliya has been seen at Children's Hospital Medical
Center in Seattle, WA, since birth, and has had in-home physical
therapy, occupational therapy, and public health nurse services.
She has delighted and amazed all of her professionals involved with
Since Liliya's parents are originally from the
Ukraine and have been in this country for only two years, the whole
family is learning English together. Liliya is becoming bi-lingual
as she learns to speak. We are interested in knowing if there are
any Russian-speaking parents of children with arthrogryposis. If
so- we would very much like to hear from you.
and Don Trout
103 W. Heather Rd.
Bel Air, MD 21014
Our son, Robert, is twenty-eight years old. He
uses leg braces and crutches. He drives with hand controls and skis
on a sit down ski for the disabled. He works full time and lives
alone. We're really proud of him after nineteen operations and a
lot of months in hospitals. He's done great.
and Nicholas Jones
12 W. Upland
Sand Springs, OK 74063
I am an eighteen-year-old woman and my son was
born 9-21-93 with Arthrogryposis Multiplex Congenita. At two months
old he got into Shriners Hospital in Shreveport, LA.... At six months
he went into the hospital to have his hips put into socket and his
clubfeet corrected. Nicholas was put into a body cast for six weeks
then into short casts. He came back to get his Klenzacs braces and
he wears them night and day for three months and is going back in
August. I'm not sure if he'll be able to walk but I am hoping he
will be able to. He cannot crawl but he can roll all over the place.
He's my little angel. He means the world to me and I want him to
have the most help that he can get and more. I would like it if
any of the parents or children would write or call me to talk for
and Jeff Romska
3125 S. Virginia #119
Reno, NV 89502
...We prefer alternative health care for our family
and I have found a couple of techniques that make a difference for
Rachel's arthrogryposis. Myofascial release has been very beneficial
for tissue that is "stuck" in her arms or remolding flabby
tissue...improving internal rotation of the legs, mobilizing scar
tissue on the feet and releasing tight areas in the hands, fingers
and toes. I am experimenting with direction of energy for her tight
If you have had success with any wholistic or
alternative therapies, Jeff and I would love to hear about it...
42 Maplewoods Dr.
North Scituate, RI 02857
... I would be very grateful if you could help
with a problem I am having in getting a voice-activated computer
for my daughter. She is unable to use her arms, hands, or fingers
due to AMC and the school she attends insists on making her write
her assignments...I would appreciate any help!
340 Pecos Street
El Paso, TX 79905
My son Paul was born on 12-30-92 and weighed 2-1/2
pounds... I fortunately was accepted at Scottish Rite Hospital for
children in Dallas, TX...Paul was operated on by Dr. Charles Johnston
for bilateral hip dislocation on March 17, 1994...Dr. Johnston has
diagnosed him as having arthrogryposis...Dr. Johnston will operate
on his club feet in the future.
I am a bilingual second grade teacher. Because
I have to work, no agency helps me financially. Because of pre-existing
conditions, Paul is refused medical health insurance.
I would like all information on arthrogryposis.
I am especially interested in mental development... Many doctors
have told me Paul will have some type of mental retardation. I feel
they are wrong. They have been wrong so far. Paul continues to weigh
21 lbs. Is weight gain a problem with children who have arthrogryposis?...
1133 N. Manchester Ct.
Wichita, KS 67212
...My daugher Julie was born 4-15-94 with AMC...She
remains a mystery to those who are treating her. What's keeping
her in the hospital is her Sleep Apnea. They aren't sure if this
is resulting from her inability to swallow. They say her throat
structures are small, but normal, and should improve as she grows...How
common is a swallowing disorder with AMC? She does have jaw closure,
lip rounding and stripping with her tongue and suction, which she
didn't have after she was born. She also doesn't drool and all saliva
gets to the very back of her throat, so they think she is doing
something (the O.T. says a "clinical swallow"). But the
Barium Swallow showed she didn't swallow. If anyone has a child
with these similar swallowing problems, please contact me...
[back to top]
From the Medical
104 Chestnut Ln NW
Glen Burnie MD 21061
I felt compelled to write to you after reading
the letter from Michelle Walter and Kevin Cavanaugh. They are concerned
that their son Taylor (born 11/22/91) "doesn't seem to want
As a former speech pathologist, I cannot overemphasize
the importance of early intervention. Any child who is speech/language
delayed should be evaluated ASAP by a certified and licensed speech/language
pathologist and audiologist. It is important to first rule out hearing
loss and then determine if speech/language therapy is needed. For
a list of licensed/certified speech pathologists and audiologists,
interested persons should write or call:
American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
Orthotic-Prosthetic Design, Inc.
1000 State Street
P.O. Box 1870
Bangor, Maine 04402
I had the opportunity recently to meet Judith
Hall at a genetics clinic. She saw two of the children I work with
and have a diagnosis of amyoplasia. I have learned much about AMC
over the past year and do find that there is very little known by
medical professionals. My goal as an orthotist is to expose more
allied health professionals to AMC and to instruct my own field
in appropriate orthotic techniques. I have spoken twice on arthrogryposis
to orthotists at Regional and National meetings. Please let me know
if you have any specific orthotic questions. I may not have the
answers but would be very happy to check with other orthotists on
complex orthotic issues.
[back to top]
References on Electrical Stimulation
The National Institute on Disability and Rehabilitation Research
(NIDRR) has funded a number of projects that either specifically
focus on functional electrical stimulation (FES) or study its applications
as part of their research on spinal cord injury and other forms
of paralysis. Some publications which may be of interest to those
involved with Arthrogryposis are:
NeuroMuscular Electrical Stimulation: A Practical
Guide, 3rd Edition (1993) by the Rancho Rehabilitation Engineering
Program at Rancho Los Amigos Medical Center. This report describes
the history of FES, clinical uses of FES, and situations where
it should not be used.
Functional Electrical Stimulation (Rehab
Brief, Vol IX, No. 11, 1986) . This report gives a history of
FES and describes specific uses. Available from the National Rehabilitation
Information Center (NARIC).
Published in NARIC Quarterly, Summer 1994
8455 Colesville Road, Suite 935
Silver Spring, MD 20910-3319
Technical Assistance on the Americans with
Disabilities Act (ADA)
Businesses, agencies and individuals with questions about ADA can
get help by calling the following toll-free number: 1-800-949-4232.
The number connects you to one of nine regional assistance centers
set up by the federal government to answer questions from anyone
on the requirements and rights spelled out in ADA. For a status
report update on enforcing the ADA from the Department of Justice,
in standard print or alternative format, call 800-514-0301.
From Rehabilitation Gazette, August, 1994
The National Information Center for Children and Youth with Disabilities
(NICHCY) has many free publications on organizations, parenting,
and educational issues with respect to children with disablilities.
To get the latest publication list, call their toll-free number,
Accessible Van Rental Guide
The Disability Bookshop has published a directory of accessible
van rentals. The companies listed rent vans that are lift-equipped.
Some also have vans with raised roofs, wheelchair tiedowns, and
safety harnesses for passengers. For information on ordering call
Kuschall of America periodically gives away new free wheelchairs
to individuals chosen by an independent committee of judges. To
apply, or for more information, in the USA call 1-800-654-4768 or
in Canada call the Kuschall distributor, Motion 2000, (416) 494-2949.
Guidelines for building no-step entryways in new or existing homes
can be found in the publication: Entryways: Creating Attractive,
Inexpensive No-Step Entrances to Houses, published by Concrete Change,
1371 Metropolitan Ave. S.E., Atlanta, GA 30316 or call 404-378-7455.
The cost is $8.
From Exceptional Parent, October, 1994
An excellent resource on the subject of accessible worship is That
All May Worship; An Interfaith Welcome to People with Disabilities
available for $10 postpaid from the National Organization on Disability,
910 16th St., N.W., Suite 600, Washington, DC 20006 (202-293-5960).
[back to top]