newsletter: Volume XX, No.1, May, 1999

Contents:

AMC Picnic Set

Gabrielle Hendrichs is organizing a gathering and picnic for AMC individuals and families to be held at a Central Florida site (Chisolm Park in St. Cloud, FL) on June19, 1999. For further information, contact Gabrielle at: GHendrichs@aol.com or by telephone at (407)957-2271 after 4pm EST.

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AMC & Aging Survey

By: John Sneddon
e-mail: xetro@cwix.com

The need for this survey arose out of conversations among adults affected by Arthrogryposis. Through discussions or chats over the Internet, it was discovered that many people were concerned if the symptoms they developed as they aged were common among those affected by AMC or even related to their Arthrogryposis. It was also found that no one knew if any research had been done or was available concerning adults affected by Arthrogryposis and the aging process. Therefore we took it upon ourselves to try to determine what may happen.

The areas selected and the questions were created from members conversations during on-line chats about the aging process. These were compiled into a questionnaire and developed into a webpage on the Internet. The summary of the answers given have been placed in this report. It should be noted that this is strictly an amateur attempt to gather data and is not to be considered a scientific or medically accurate study of any kind. It should however hopefully show the need for research and study of this area by qualified medical personnel. Please read and understand the disclaimer at the end of this report*.

Most Noticeable Aging Symptom
38% reported that loss of stamina, onset of fatigue or a lower activity level is the most noticeable symptom of the aging process.

32% named pain, aches, or stiffness as the most noticeable symptom from aging. Many of these people reported having more than one of these symptoms - pains, stiffness and fatigue. For some it has become enough of a factor to affect their life-styles, job performance or their career. Many people reported they now try to avoid overexertion as much as possible by more careful planning of daily schedules and activities.

10% named the change in their mobility as the most noticeable, such as relying more on crutches, braces and other aids, or for the need to use wheelchairs or scooters now.

5% listed increases in scoliosis and other back problems as the most noticeable.

5% said breathing problems due to scoliosis or other causes, is the most noticeable aging symptom.

7% reported no symptoms yet.

3% named miscellaneous symptoms-weight gain, depression, or other medical problems.

Mobility
50% have the ability to walk unaided, 25% need braces, canes, crutches or a combination.

25% use either a wheelchair or a scooter all the time or most of the time for extended distances.

Has aging affected their mobility? 61% of those who answered this question said their mobility had been affected to some degree by age. Changes ranged from experiencing more aches and pains, which limited their distances and time spent outdoors, to becoming more careful and dependent on aids such as canes, wheelchairs or scooters for long distances. Only 30% of the 100 could define the age at which these changes occurred. And of those who answered, there is a wide age range, some started noticing changes in their teens, most experienced it beginning in their 20's or 30's if a change did occur. Two people noted the change in their 40's and 50's.

6 out of the 76 people answering this question reported an improvement in mobility as compared to
childhood, mostly due to some type of surgery in adulthood such as ankle fusion or neck fusions.

30% reported they have experienced no change in mobility at all due to aging.

Back/Neck problems
The news is not good here, 86 people responded to this question. This is the most common symptom reported. 70% reported some type of noticeable back or neck trouble or both. The most common problems were increases in scoliosis and back pain, and increases in neck stiffness or pain or a combination of these two symptoms. Most of those responding stated these changes began as early as their teen years through their 20's. It is not known how many have had surgical or medical treatment for this condition in childhood.

30% reported no problems or increases of back/neck troubles.

New Pains & Other Problems
Aside from back problems, the lower half of the body, from the hips on down to feet seem to be the areas where people report having the most new problems as they aged. 20% reported pain in hips. 11% had developed pains in one or both knees. 11% had ankle or foot problems. 8% reported one or both shoulder joints aching. 8% have aches or pains in their arms or hands. 5% reported new pain or numbness in hands. 3% reported developing pains in two or more of the above body areas. 3% reported having aches in all joints. 20% reported no new pains or problems had developed since reaching adulthood.

Muscle Weakness
52% said they have not experienced any symptoms of muscle weakness. Of the 48% who did have recurrent episodes or symptoms of muscle weakness, the age at which they developed or first noticed this was spread out. For the majority it was reported over their 30's; it was mid-to-late 20's for others. 20% reported it developing in their 40's & 50's.

This condition was ongoing or daily for some, for others it was most often experienced after a hard days work, overexertion or extended activity. Arms and hands are the most common body areas affected, followed by legs. Some reported experiencing muscle weakness in both arms and legs, others mentioned back or shoulder area. For many people it was a daily occurrence, others said it was brought on whenever they have strenuous days or overexert themselves.

Careful planning of scheduling or excursions was necessary to avoid or alleviate this as much as possible. 10% replied they had been told or thought they might have a condition similar to Post-polio syndrome.

48% said they have the same muscle tone and aging has not affected it. 46% had lost some amount of muscle tone or mass due to aging. 6% reported a gain of muscle tone or strength.

Arthritis
67% of the people who answered this question said they either had arthritis or experienced arthritis-like symptoms. The most common type of arthritis listed was osteoarthritis but it should be noted that only 6% have had an official diagnosis by medical personnel. One question this survey did attempt to address was the belief that rigorous and aggressive physical therapy in childhood may lead to arthritis in adulthood. 45% of the people who described their childhood physical therapy termed it rigorous or painful or both. 65% of those who said they had rigorous physical therapy, described themselves as having arthritis symptoms. By comparison, of those who had mild or no physical therapy, 45% have arthritis symptoms.

Surgery
The average number of surgeries per person was 11. When asked if they have had any problems in areas of previous surgery, 57% replied they did. Problems were varied, ranging from pain (25%), stiffness (23%), muscle weakness (12%), numbness or nerve damage (9%), to various assorted symptoms or unspecified problems (31%). 43% reported no problems related to surgery areas. It was often reported that recovery from surgery seemed to be harder and take longer than surgery they had done in their youth.

Doctor Diagnosis and Medical Treatment
The main factor that was stressed through the replies to this question was how difficult it was to find adequate and knowledgeable medical personnel for treating adults with Arthrogryposis. Many people reported doctors unable to make actual diagnoses of cause or to recommend a specific treatment for fatigue or pain related symptoms because of the lack of knowledge of Arthrogryposis and it's effect on adults as they age. Many people simply did not seek out medical treatment because of this consensus unless absolutely necessary.

The most common symptoms they sought out treatment for were fatigue, arthritis symptoms or pain in hip areas. Treatments most often recommended by their doctors were anti-inflammatories and hip replacements respectively.

Alternative Therapy
One-third of the participants in this survey replied they have used alternative therapy. Most commonly used therapies were massage, hydrotherapy and acupuncture or acupressure. Massage therapy (Trager, Feldenkrais, Rolfing and others) was noted to provide excellent results for some but that cost or lack of insurance coverage limited or prevented many from continuing this therapy. Hydrotherapy, hot tubs, or hot baths brought excellent results or relief for many by loosening them up and relieving aches and pains. Others relied on pain medications or maintaining a workout or stretching routine to keep active and flexible. Two people reported good results for aches and pains from medicine patches. Two participants were trying vitamin therapy (B-6 & B-12), but did not report any results. Mentioned also were meditation, yoga, and martial arts.

What helps the most?
When asked to describe any medicine, therapy or other treatment that brings relief to any symptom related to aging and Arthrogryposis, 44% replied pain or antiinflammatory medication, including both prescription and over the counter types such as Tylenol and aspirin. 20% mentioned massages or deep muscle therapy helped the most. 18% replied heat treatments, using hot packs, hot showers and baths, or saunas brought relief. The remaining 12% who replied to this question included various answers such as forcing themselves to stay or maintain active, using mobility aids such as canes or wheelchairs, or one of the forms of the alternative therapy mentioned previously. Some participants mentioned that if they stopped their exercise or stretching routines, or slowed their activity level, they noticed the effect and lost mobility or stamina.

Aging Adaptations
When asked to report what adaptations or devices they now use due to aging, the replies were many and varied. The most commonly mentioned adaptation was the use of mobility aids (wheelchairs, canes, etc.), followed by the need to accept limitations and not overexert if possible. Also mentioned was the need to rely on other people more and to use various helper devices for daily activities.

Miscellaneous data
There were 100 participants who answered the questionnaire. It should be noted that not all participants replied to every question, nor were they required to. Percentages listed above are based on the total number of answers given for each individual question.

65 Females, 35 Males

Ages ranged from 18 to 63.

The average age was 33.6 yrs.

18-29yrs: 37 people

30-39yrs: 36 people

40-49yrs: 17 people

50-59yrs: 7 people

60+ years: 3 people

63 described their stature as small or below average.

30 described themselves as average.

7 people stated they were above average in stature.

Only 24% named their type of Arthrogryposis, 9 people replied amyoplasia and 15 replied distal. It is not known how many of those answers were officially diagnosed. The majority have never been accurately and medically diagnosed as to what type of Arthrogryposis they have.

Weight gain was experienced by 63% of those responding to this question. 25% stated they have maintained their average weight over the years. 12% reported a loss of weight compared to earlier years.

*Disclaimer: This Aging & AMC survey is simply an attempt to determine what may be common symptoms or problems experienced by those who have Arthrogryposis as they age. The questionnaire and this report follow no scientific or medical standards. There was no control group nor was they any attempt at verification of answers given. It's based solely on replies received from the survey over the Internet. No claims are made about it's accuracy or reliability, the information contained herein is not meant to be used to determine anyone's choice of medical treatment. It is provided only as entertaining and hopefully interesting reading material. You should always consult qualified medical personnel for treatment of symptoms or for advise when making any decisions.

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New Survey on Causes of Arthrogryposis

From: John Sneddon
e-mail: xetro@cwix.com

I would appreciate a mention of, or a link to the newest survey of the chat group's if it's possible. It's a short questionnaire to develop some data about a few possible causes of AMC and their occurrence rates. We're also trying to determine if there appears to be any cluster sites of AMC births for whatever reasons. This survey is titled "Causes of Arthrogryposis" and is located on the web at: http://members.aol.com/amcchat/etiology.html

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Book Review

Arthrogryposis: A Text Atlas, Cambridge University Press, New York, 1998. 178pp. Edited by Lynn Staheli, M.D., Judith G. Hall, M.D. Kenneth M. Jaffe, M.D., Diane O. Paholke,B.S. ISBN 0-521-57106-5 (hc) List price: $85.00

This recently published book is directed at both health professionals and families dealing with arthrogryposis. It consists of eight chapters, each written by a different author. Chapters include:

Chapter 1; Overview of Arthrogryposis by Dr. Judith Hall, A medical geneticist who has specialized in arthrogryposis and head of the Dept. of Pediatrics at the British Columbia Children's Hospital in Vancouver, British Columbia. The opening chapter by Dr. Hall is excellent, giving a concise explanation of the causes, common types, and genetic aspects of arthrogryposis in plain language. Under the heading of "Preventable Complications", brief explanations are given for anesthesia complications, arthritis in older patients, fractures during birth, and obesity.

Chapter 2; Orthopedic Management Principles by Dr. Lynn Staheli, retired Director of the Orthopedic Department at Children's and Professor Emeritus at the University of Washington Medical School. This chapter covers both nonsurgical treatment methods (casting, physical therapy and occupational therapy, splinting and bracing) and also surgery ( timing, types of surgery, risks and complications). Explanations are clear and accompanied by numerous illustrations (some quite graphic) and drawings. Most of the chapter is directed at "classic arthrogryposis" (also called amyoplasia) but the last part of the chapter includes a discussion of special considerations for other forms of arthrogryposis.

Chapter 3; Upper Limb and Spine by Dr. Alan Bach and Dr. Edward Almquist, Clinical Professors at the Department of Orthopedics at the University of Washington Medical School and Dr. Michael La Grone, Clinical Assistant Professor at the Department of Orthopedic Surgery at Texas Tech University. The authors of this chapter recommend early splinting and range of motion exercises to increase hand and arm function. Several different types of splits are pictured. "The majority of children with upper extremity manifestations of arthrogryposis will not need surgical treatment. At Children's Hospital and Medical Center in Seattle, 70% of the children seen at the arthrogryposis clinic did not undergo surgery on the upper extremity. The 30% who did undergo surgery were mostly patients with amyoplasia." (p.47). Because of the high degree of variability in the effects of AMC on the upper limbs, the authors recommend an individualized approach so that surgery does not interfere with the successful adaptations that the patient may have made.

The authors report that scoliosis (curvature of the spine) occurs in about 20-30% of arthrogryposis cases, ranging from minimal to severe. The authors note that scoliosis is usually not present at birth but occurs in the first few years of life. If scoliosis is not present in the first few years of life, it is not likely to become severe later on. Bracing may be used to treat those with small, flexible curves of the spine (25-40 degrees) but surgery will likely be needed in more severe cases. Results of treatment are generally good.

Chapter 4; Lower Extremity Management by Dr. Lynn Staheli. This chapter is based on 95 cases of amyoplasia and literature review. Treatment of dislocated hip deformities is discussed in detail. When both hips are dislocated, Staheli states that the appropriateness of surgery to correct the problem is controversial. However, Staheli believes that surgical treatment (reduction) "improves the quality of gait in both function and appearance. The hips are more stable. The gait is more efficient. The poor outcomes following open reduction of dislocated hips were reported using outdated treatment methods." Extensive discussion of the treatment of contractures at the knee and foot deformities is also included. Numerous drawings illustrate the various kinds of foot surgeries. Advantages and disadvantages are described.

Chapter 5; Rehabilitation Scope and Principles by Dr. K.M. Jaffe, Director of Rehabilitation Medicine at Children's Hospital in Seattle. This chapter gives a good summary of the goals of rehabilitation for those with physical impairments, but offers few specific recommendations for those with arthrogryposis.

Chapter 6; Physical and Occupational Therapy by C.S. Graubert P.T., D.L. Chaplin, M.S. O.T., K.M. Jaffe, M.D, all at Children's Hospital in Seattle. This chapter organizes recommendations on therapy into sections according to the age of the child: Birth to One Year, Toddler to Preschool Years, Early School Years, and Teenage Years. In the first year, particular emphasis is placed on physical therapy, splinting and casting. "For reasons not entirely understood, restriction in joint range of motion can be best overcome during the first year of life through various techniques, including stretching, positioning, splinting, and casting."

Feeding difficulties and possible solutions are also discussed. In the toddler to preschool period, stengthening exercises to develop muscles necessary for walking are emphasized, as well as life skills such as self-feeding, dressing, and toileting. Various techniques and aids are discussed and illustrated. Mobility devices (power wheelchairs, push toys, walkers, wagons, etc.) are recommended for those children who are unable to otherwise get around.

The sections on early school years and teen years focus primarily on overcoming the physical challenges of attending school: the need for greater mobility, self-care, handwriting, and computer use.

Chapter 7; Social and Emotional Well-Being by Deborah Hill, PhD., Clinical Psychologist, Dept. of Rehabilitation Medicine, Children's Hospital in Seattle. This chapter touches on a number of issues in the social and emotional development of someone with a disability. The recommendations for dealing with those issues are sound, but fairly general in nature.

Chapter 8; Assuring Quality Education by Brian Ross, M.Ed., Director, Department of Education, Children's Hospital, Seattle. This chapter gives a detailed discussion of the current laws dealing with the education of the disabled from birth through high school. Of particular interest to new parents is The Individuals with Disabilities Education Act of 1990 (IDEA) which "mandates a free, appropriate public education for children and youths with disabilities between the ages of 3 and 21 years." Part H of the Act also provides funds to states for educational services to children from birth to the age of 2.

Services covered under the Act may include "family training, counseling, and home visits, speech pathology and audiology, occupational therapy, physical therapy, psychologic services, medical services for diagnostic or evaluation services, and health services necessary to enable the infant or toddler to benefit from the other early intervention services (excluding, for instance, surgical interventions)."

General comments: This book will be most useful for parents of young children with Arthrogryposis and for doctors, therapists, and teachers who deal with children with AMC. For those groups it is a valuable source of the current knowledge with respect to arthrogryposis. What is lacking is any information or discussion of AMC among adults. This should not be surprising, since the book was written largely by the staff at a children's hospital. Nevertheless, a chapter dealing with the long term effects of arthrogryposis and adult concerns such as driving, employment, and resources for the adult disabled would have made this a more complete book on arthrogryposis.

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From Families Around the World

From: Chris & Laraine Brown
in an email message to: The ArthrogryposisGroup, (TAG) United Kingdom)
e-mail: TAGUK@aol.com

The last fortnight has been somewhat traumatic with Natalie being in a Paediatric Intensive Care Unit following what was supposed to be a routine operation for the correction of her club feet. Due to the risk of AMC children being susceptible to Malignant Hyperthermia when anaesthetized Natalie was given Propofol as a general anaesthetic. She had been quite ok with Propofol when given for a short MRI scan last year. This time the operation took some time due to the difficulty of finding her veins. Result: lung, heart and kidney failure and two weeks in intensive care. Apparently the few recorded cases of allergic reaction to Propofol in children have been where long doses have been given and almost all have died.

Has TAG come across this before? Has the subject of anesthetics been covered in detail at a TAG conference? Would a note to Avenues (or forwarding of this e mail) be appropriate?

There is no rush as we now have Natalie back home, a little battered and bruised but thank god, alive. I did contact the Childrens' Hospital, Seattle but they could not cast much light on what has happened. As they said at St Mary's, Paddington it will be a brave anaesthetist who gives our daughter a general anaesthetic in future.


From: Peter Simmons
67 Lambert St
Bathurst, 2795
Australia
e-mail: pds@ix.net.au

Does this sound like AMC? I have a very long story to tell but I'll try to keep it brief. My five year old son Joe has been treated since he was 3 days old for severe bilateral talipes. Consistently we have been told by paediatric orthopedic surgeons that his are the worst case of talipes they have encountered where there is no other condition diagnosed.

He had serial casting for the first 3 years of his life, during this time he had two operations on each foot. Each operation made a temporary improvement only. Last year we tried the Ilizarov external fixator approach on his right foot, followed by soft tissue surgery. This slow (8 months in total) treatment has left him, 5 months later, with a foot which is fairly normal in size and shape. However the foot is not correctly positioned and although he walks much better on his right foot, he still walks on the side.

Last week we saw his surgeon for the first time in 12 weeks and he suggested that Joe might have arthrogryposis. He seemed to base this assessment mainly on Joe's very wasted calves and the failure of some of his muscles to start working. In particular, muscles he had moved to help keep the foot in its corrected position.

Joe is small for his age, has two older brothers, and is extremely active in plastic, knee high AFOs. He is scheduled for an MRI in June before surgery starts on his left foot. If anyone has a similar story or comment I would be interested to hear.


From: Martha Ayalz
P. O. Box 1334
McAllen, TX 78505-1334

My son Alvavo is now 2 years and 5 months. He is walking with braces and a walker. Last year was very hard for all of us. He had 3 surgeries: foot, knee and ears. The knee surgery was not successful and he may need another surgery. He uses his braces and walker only when he is with other children. In my home he doesn't want to walk. I put him in school in the morning and there he walks all the morning. The doctor told me he needs motivation.

We live in a 2 floor apartment we rent. I am planning to buy a small house. We are very low income, but he needs a house accessible to him. I have heard there is a program that can help me to make some changes in my home to be access to him. Please let me know about programs that can help with these changes. Bathroom, bedroom, ramp, large doors.


From: John and Nancy Michell
44999 Cree Court
Fremont, CA 94539-6513
e-mail: nancyr@thegrid.net
web page: http://mypage.goplay.com/NancyM88/books.html

Kids do grow up fast. When Jenny (7/2/82) was in the seventh grade, she had 12 hours of surgery for scoliosis. Her spine was fused, but she hemorrhaged during surgery and took 30 units of blood. After a bout with Adult Respiratory Distress Syndrome (ARDS), a bleeding ulcer and a blood infection, she finally decided to get well. We took her home and tutored her like crazy in math. She missed school all of November, December and part of January, but she managed to catch up with her peers in no time! She did require a new electric wheelchair (adult) with a new seat (since she didn't bend at the waist as well) and a tray table which she had not previously needed. To hold all this we got a new full-size van with a lift - no more mini-vans! We felt like a new family! (Broke but new!)

Other normal growing pains included the pulling of seven teeth and an evaluation for braces. Because the orthodontist felt that her roots of her teeth were too shallow for braces, we managed to avoid that treatment. He didn't want to move her teeth around, take the bands off and have all her teeth fall out! Fortunately, after the seven teeth (no wisdom teeth involved yet) were pulled, her teeth became relatively straight. She has a pretty smile and we don't regret our decision.

The most exciting thing we did last year was drive across the country to take a week-long cruise from Miami around the western Caribbean. We went with eight other members of my family, three of them being Jenny's cousins. The four teen and preteen girls had a ball doing their kid stuff while we adults had some time to ourselves. Our travel agent found that Carnival had the best handicapped facilities and access. In fact, the only area of the ship she could not visit was the jogging track on the very top deck. The gym was accessible as was the beauty parlor. She was able to go ashore at Cozumel and Jamaica, but at Grand Cayman Island the ship was anchored in the bay and she could not be transferred to the boat. Although shopping areas were accessible at both stops, the streets were very crowded and driving a wheelchair there is not recommended! In fact, when I went on an official tour in Jamaica, John and Jenny went on their own private tour. Taxi seats were folded down in a mini-van and four big Jamaicans lifted the wheelchair into the cab. Off they went! Jenny was a little dubious about the whole thing, but it was a great adventure! On the way back to California, we stopped by Disney World, Epcot Center and Cape Canaveral and the Kennedy Space Center. All were well prepared for disabled visitors.

John retired in 1996, and the medical insurance for Jenny ran out. She is now "self-insured." She had $700,000 in medical bills with a million dollar cap, and the new limit is $350,000. We don't plan any more surgeries for a while! But she has found other expensive things to get involved with - computers! Seems we have a teenage computer genius in the house!

John is in charge of hardware, Jenny is in charge of software, and I am in charge of writing. I am PTA treasurer (district), PTA newsletter editor (council) and budding novelist. I spent the last year writing a trilogy of Young Adult novels which I will be publishing myself next March. Jenny's computer has the color printer and the scanner, so I had to raise her allowance to get her to start my PTA treasurer's web page on her computer as well as to scan in drawings for my books and the color photos for advertising fliers. She will probably go into computer graphics as a career, so she is getting a head start already. She spends a lot of time helping her friends with their web pages. And I only got online last week! I call her when I don't know what to do. Which is often. I would rather stick to word processing and leave the complicated stuff to others.

My three novels, "The Changing Earth Trilogy," take place twenty to twenty-three years in the future in our home town of Fremont, CA. They revolve around a series of natural disasters and how local high school students react to these changing circumstances. The heroine of my novel is named Jenny, and Jenny has arthrogryposis and uses a motorized wheelchair. (Surprise, surprise! Write what you know, they say!) The Jenny of my book has a bit more arm strength than the real Jenny, and the book Jenny does not have a tray table on her wheelchair. (I needed to do this for the plot.) Otherwise, the two Jenny's are virtually identical. The students of this high school also deal with normal school problems such as drug abuse, HIV and AIDS, theft, gay and lesbian issues, religion, violence, overcrowding, cultural awareness, immigration and bomb scares - not to mention a group of bad guys in the mountains getting ready to "save" the world in their own devious way! Gently woven throughout all these adventures is the issue of disability awareness. The books are suitable for students in grades 6-12, as well as for their parents!

The covers of the books were painted by a friend of mine who teaches art at the high school my daughter attends, and five present and former students did the six drawings that are in the three books. (I wanted students to contribute to a book about students.) The books will be available March 1st, 1999 and the price for each is $5.95 plus shipping and tax (CA). I would like to have a slightly lower price for those in the arthrogryposis community, but self-publishing is expensive and I can't give as much of a discount as I would like. So perhaps my price will be a flat $20.00 which will include shipping and tax. There will be a discount table for volume purchases. The books will be available through amazon.com as well as from me, and I hope to get one or two national wholesalers/distributors, although I am still working on that right now. I will avail myself of any Internet connections in the arthrogryposis community, so perhaps distribution will not be so much of a hurdle as it seems to be right now. I hope that my books will be of interest to the arthrogryposis community as well as to people at large. I hope you will enjoy reading them as much as I enjoyed writing them. The names of the books are "Earth Rising", "Raging Skies", and "Global Warning." Look for the cute blond girl on the cover - the one with the pretty smile! For up-to-date information on ordering "The Changing Earth Trilogy," please access the web page or use my address or e-mail. Thank you!


From: The Gomez Family
600 Oak St.
Garland, TX 75040

On July 1998 our son was born with Arthrogryposis Multiplex Congenita. We would like to have some information regarding his condition. We would like to receive any type of information or help that would help us to improve his condition. Our son does not have any flexibility on his arms, he does not bend his elbow, hands, fingers, hips and knees. We would like to know other people who are going through the same situation and how they are handling it. We would like to know if our son would be able to live a normal life. We would appreciate your help.


From: Stephanie Bartlett Ginsberg
356 Idaho St.
Ashland, Or. 97520
e-mail: stbartle@orednet.org

Just a quick note to share a small happiness. Today, in his teaching capacity, Mel visited Morgan's elementary school. In the teachers' lounge, Morgan's PE teacher came up to him and said, "I need to talk to you about Morgan. Today he walked on the balance beam!" She went on to add that she held his hand, and that he had to really concentrate to remember to swing his left leg around and onto the beam again (because of the missing pelvic muscles), but he kept on and walked the entire length! Not bad for a kid we were once told would never walk at all...


From: Mandy Phillips
e-mail: beetle@zoomnet.net

Just a note to say hello and talk a little about my precious grandson. He is 3 years old and has Arthro. He has had surgery for his club feet , his knees, hips and right elbow. Finally at the age of three years old, he can finally touch his beautiful face....., feel his own hair, suck his thumb, and feed himself. This all due to the wonderful people at Shriners Hospitals. If you have parents out there without the knowledge of Shriners, please have them contact them immediately.....Today is not soon enough. Our little wonder man is now standing with long leg braces, and someday soon with God's Grace, he will be walking. To us, his grandparents, he is a god send to us.

Anyone who would like to chat regarding Arthro, please feel free to e-mail me at beetle@zoomnet.net. We can talk anytime.

My daughter has a lot of stress on her with all the surgery's and therapy. If you feel you need to talk to someone, I'm here. My daughter, Angie, is a strong person and a trooper and I am so proud of her for all that she has accomplished with this and for Josey. She is wonderful, and some days she calls and is at the end of her rope. But, just being able to talk with someone, helps to take the edge off and helps to calm the soul. Feel free to e-mail and we can chat. God bless you.


From: Ben and Judy Wyant
3251 Balsam Dr.
Winter Park, FL 32792
e-mail: PQVC79B@prodigy.com

...My mother passed away on Monday and we asked that donations be made to your organization rather than flowers being sent. I'm not sure how many people will respond to this but in case you get any donations on behalf of Betty Wiant you will know why.

I personally want to thank you both for the work you have done over the years. I know when our son was born with AMC it was great to receive the information you provided at the time.

Byron has just turned 15 and is doing quite well. He has what I describe as a classical case of AMC, affecting all his extremities. He is looking forward to getting his restricted drivers license soon and we are presently looking to buy a new family car which can accommodate his physical limitations without having to use adaptive aids. This is no small effort. I let you know how it works out. Thanks again for what you do,

[Editors Note: Avenues wishes to thank those who generously contributed to the Betty Wyant Memorial Fund. Over $600 dollars were contributed to Avenues in the name of Betty Wyant. The money will help fund another printing of the Avenues pamphlet.]


From: Marian Barnett
10819 Garrett Street
Stanton, CA 90680

Can you provide me information as to where I can get help for my Niece, Jennifer Erskine. Jennifer was born with arthrogryposis 18 years ago. She received treatment from the DuPont Institute in Delaware but now that she is an adult children's hospitals and clinics will not treat her.

Jennifer needs help with movement of her arms. She cannot feed or dress herself and needs assistance to go to the bathroom. Her arms are still with only 10-15% movement. Is there a doctor or clinic that might be able to perform an operation to improve the muscles in her arms?

I thank you very much for any information you can give me. Jennifer is a wonderful young girl with high IQ but is handicapped by her inability to perform routine daily personal functions. Please help.


From: Blossom Handelsman
190 Beach 136 Street
Belle Harbor, N. Y. 11694
e-mail: BlossomFra@aol.com

I am an OT working with a 5 year-old girl with arthrogryposis. She is able to independently walk. She has no functional use of her arms. She has a weak grasp in her right hand. There is some movement of her fingers in her left hand. She is unable to flex her arms at the shoulder or to supinate her arms. She recently had a muscle transfer which has given her approximately 80° of flexion in her left elbow. A more recent transfer was done on her right arm using another muscle since the first surgery did not work at all for the right arm. Hopefully this will give her some functional use of her right arm.

She is able to remove her shoes and socks using her feet. I was wondering if anyone has any ideas on how she can feed herself, dress herself and perform toileting more independently. Her intelligence is within normal limits and she is able to communicate. Does anyone know of any devices that could be of assistance to her? I would be most appreciative of any ideas or suggestions that you might have.


From: Ann Marie Davison
#102 - 5888 Dover Crescent
Richmond, B.C., CANADA V7C 5R9
e-mail: amhowell@pop.unixg.ubc.ca

I am a woman who is 37 years old with all four limbs affected. I have walked using full length leg braces since I was turning 5 years old. Unfortunately, unlike Forest Gump, attempts to run have not made them disappear. Before that, I dragged my butt around on the floor in a manner very similar to what is still required when I need to pee in the middle of the night. Amazingly, I don't use crutches which makes life much easier. I also have a motorized three wheel scooter which I keep at work. I am quite short (4'9") with limited reach, so we have an apartment designed for wheelchair access although I never use a wheelchair at home.

Like many others on the list, I was determined to be a success in spite of my disability. God blessed me with a brain which functions extremely well (most of the time) and I used that blessing to obtain a PhD in genetics from the University of British Columbia in Vancouver. I did my degree through the medical genetics department, although I worked with worms and not people. Judy Hall was the director of the clinical side of our department when I met her. It was fairly amusing when I found out that AMC was one of her specialties. I asked her why she hadn't informed me of a lecture she had presented on AMC ( which I had missed). She said that just by looking at me she wasn't sure of my diagnosis, and that she didn't see it as being appropriate to approach me since I was there as a colleague and not a patient. We did set up an appointment for her to "check me out". She says that the only way I'm not typical is that I have fairly well developed shoulders in spite of an almost total absence of biceps. I have always said that I'm a "one in a million lady" and this is just one more confirmation of the truth of that.

I found that working in a basic research setting didn't suit my outgoing nature, so I switched my career to teaching. I teach at a community college and I love my job (again, most of the time). I have been teaching biology, genetics and biochemistry since the summer of 1993.

One of the most challenging areas of my life was my relationships with men. I made some foolish decisions because of my need to have men see me as a sexual being. For a while I was engaged to a paraplegic who finally realized that he would prefer to be with an able-bodied woman and broke off our engagement on Christmas Eve. That was one of the lowest points of my life, but as it says in Romans 8 "all things work together for good for those that love God". I really believe that. It took a few years more, but I eventually did find the right guy. He is a cute, 6 foot blue-eyed blond who really loves me. It took him some time to figure that out because I did not fit the picture of what he thought he wanted in a partner. When he did finally sort it out he proposed to me in front of his family on Christmas morning almost two years ago. We were married in May of this year and had an awesome honeymoon in Jamaica. His family has been wonderfully supportive. Unfortunately, Mark works out of town during the week so we usually only have weekends together. It is not feasible for me to just quit my job and go insane in the middle of nowhere (I'm not kidding) where the Hydro dam is located.

Because of my extremely limited arm strength, taking care of babies would be basically impossible on my own. I have a permanently dislocated hip and my orthopedic specialist is concerned that a pregnancy could cost me the ability to walk. This is too high a price to pay. We might adopt an older child at some point, but not until we're living together full time and have some place bigger than our one-bedroom apartment. It really blesses me to read the success stories of those of you with children!

P.S. My husband has accepted a transfer to a position in the Lower Mainland, so we will be living together full time. Today was his first day at the new job; I'm right now waiting for him to come home and tell me how it went. So we're going through an adjustment period learning to deal with living like "real" married people.


From: Dana
e-mail: D4evr11599@aol.com

I am the oldest of six kids. My mom adopted 4 kids. They all have problems that may not be visible but are there.(Mental/emotional) I have it in my arms and fingers. It is not too bad. My arms don't go straight and my fingers are crooked and I can't move my wrists fully. When I was born my doctors told my parents I would never walk and would be in a wheelchair. I proved all of them wrong. I can do everything, except maybe a cartwheel. I am one of the happiest people I know and everyone I know says it too. I get good grades. Arthrogryposis has not changed my life. I think it made me stronger. I grew up with the names like T-Rex, but you know what, I just told them my problem and then they felt really stupid. I have found in my fairly short life, that everyone has some sort of problem, maybe not always noticeable but they have some kind.

I was blessed with a wonderful family and wonderful friends, I get good grades and I was the lead in the school play last year. Don't worry so much, just be a good parent, and don't baby your kids. I am very independent and my mom would always try to get in my "fights" with it. I got so mad. I knew how to handle it. My mom is my best friend though and that won't change.

Just tell them they can do anything. If they say they will end up in a chair just hope that they can teach themselves how to get past it so they won't have to. They told me I wouldn't walk. Also, I have had many oppurtunities to have surgeries. I have had 2 on my pinkies and left forefinger. They didn't really do anything, at least not on my pinkies. I have had the oppurtunity to have surgery on my elbows but I have a very good orthopedic surgeon who told me the downfalls and that it could reoccur and scars and the possibility of infections and the time and pain that would go into it. Luckily I have stopped growing and it will not get any worse. I would like to keep in touch with anyone else who has had similar experiences. (This is a letter I wrote someone but it gives what I would like everyone to know out there.)

Reprinted, with permission, from the Avenues Discussion List


From: Melissa Snyder
Columbia, South Carolina
e-mail: ruiz6708@bellsouth.net

I have heard about many people that have arthrogryposis but are not any where close to where I live. If you hear of any interesting cases that could help with my choices in surgery or in life please email me as soon as possible.I am very interested in meeting someone my age with the same or similar disability to mine(that lives close to me). I'm dying to talk to someone who knows my feelings.

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Short Notes

Arthrogryposis On the Internet
Gabrielle Hendrichs has a web page at: http://members.aol.com/gabyh/page/AMC.html called Arthrogryposis Online.

Barbara Burke has a page devoted to her adopted daughter, Soo Hee, who has AMC at: http://pages.whowhere.com/community/burkemeister/. Included is information on treatment and adaptive aides that have proven helpful.

Danial Loppnow has created a web page focused on his daughter Deanna, who has AMC at: http://home.att.net/~dloppnow/. Danial writes: "Just wanted to share our WEB Page address. It is about our families path regarding arthrogryposis. Plus it has many cute pictures of our Deanna. Hope it may help some other families and answer questions that friends and supporters may of had and still do... Enjoy..".

The Mid-Atlantic Support Group (Chris Johnson, Director) has a new web page at: http://hometown.aol.com/midatl4amc/club/index.htm

Product Guide
Available from The Disability Resource Library: The Complete Product Guide for People with Disabilities1998 By Leonard & Assoc. (No Limits, Inc. 1998) With over 1,100 products and 300 pages. $22.45 Call (800) 686-6049 to order any time, open 24hrs.

New AMC Clinic

From: Dan Snelson
e-mail: snelsond@gte.net

My name is Dan Snelson, and I am a Certified Prothetist, Orthotist (CPO) and the Director of Orthotics at Shriners Hospital for Children in Los Angeles,Ca. We have just started an Arthrogryposis Clinic the 2nd Thursday of each month. We are currently looking at how children and adults have solved the Toileting problem when the upper limbs are involved. If anyone can give us some helpful hints I would love to be able to pass them on.

Product Catalogs

From: Darrin and Jaime Brown
e-mail: jdndr1@apci.net

Recently our son's therapists gave us some catalogs with products that make life with a disability easier. They have everything from wedges to devices that make it easier to put your socks on, to utensils that assist with eating, etc. The catalogs are free so I thought I would pass along the phone numbers to get on the mailing list. The Flaghouse catalog # is 1-800-793-7900, and the Sammons Preston catalog is 1-800-323-5547. The products are pretty expensive, but check with your insurance to see if they will cover some of the cost. Hope they are helpful to some of you.

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