1. Orthoseek | Orthopedic Topics | Arthrogryoposis Information about arthrogryposis. http://www.orthoseek.com/articles/arthrogryposis.html

Arthrogryposis What is it? Arthrogryposis translated from the Greek literally means "curved or hooked joints." Hence, this term is used to describe multiple joint contractures present at birth. There are many causes for congenital multiple joint contractures, and could be due to abnormal nerve or muscle development in the womb. However, the commonest form of arthrogryposis, present in 40% of cases, is a condition called amyoplasia What causes it? The cause of arthrogryposis is varied, and not entirely understood. Certainly, in many cases, abnormal nerve, muscle and connective tissue development is involved. Lack of movement of intrauterine movement is also responsible, as in oligohydramnios . Genetic factors do play a part in many cases, as do environmental factors like drugs. Incidence of arthrogryposis is one in 3,000 live births. What are the symptoms? The child is born with multiple joint contractures in all limbs. In the commonest form of arthrogryposis, called amyoplasia, the typical deformities are often severe and symmetrical, as follows: shoulder internal rotation deformity elbow extension and pronation deformity wrist volar and ulnar deformity hand fingers in fixed flexion, and thumb-in-palm deformity

2. Arthrogryposis Hub Links to information and resources for arthrogryposis. http://www.knowdeep.org/arthrogryposis

Arthrogryposis hub Arthrogryposis is a musculoskeletal disorder, which is characterized by multiple joint contractures found throughout the body at birth. It occurs in 1 out of every 3000 live births. The major cause of arthrogryposis is fetal akinesia due to fetal abnormalities or maternal disorders. Frequently Asked Arthrogryposis Program Questions by KidsHealth - from the Nemours Foundation. Your child has been diagnosed with Arthrogryposis - by the Spokane Shriners Hospital. Arthrogryposis from eMedicine Journal - by Harold Chen, MD, MS, FAAP, FACMG, Chief, Professor, Department of Pediatrics, Section of Perinatal Genetics, Louisiana State University Medical Center. Arthrogryposis by Orthoseek Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes - by U.S. National Library of Medicine, National Institutes of Health. Arthrogryposis Multiplex Congenita: (Amyoplasia) - from Wheeless' Textbook of Orthopaedics. Arthrogryposis by the CaF Directory - medical text updated by Dr C Pollitt, Specialist Registrar in Clinical Genetics, School of Biochemistry and Genetics, University of Newcastle, Newcastle upon Tyne, UK. Arthrogryposis Multiplex Congenita (AMC) - from the University of Alabama at Birmingham.

3. Jamie-Lee's Arthrogryposis Multiplex Congenita Page I was born with arthrogryposis Multiplex Congenita. Basically, this mean that my joints (i.e. http://www.geocities.com/SouthBeach/Surf/7325/jamielee.html

Hello fellow cyber users! Im Jamie-Lee. This is a picture of me advertising for the Crippled Children's Association in South Australia. It's a few years old now, but a favourite. I am 11 years old, and I am new to the internet. I was born with Arthrogryposis Multiplex Congenita. Basically, this mean that my joints (i.e. elbows, knees....etc) are fixed. They don't bend....and I can't walk. Last year, I came to live with my Dad (Scott) and his wife Karen. Karen left her job so she could take the best possible care of me and my brothers and sister. Karen has made this page for me to try and locate anyone else in the world with the same condition as me. If there is anyone out there who has this condition, or knows of someone else who has, please, please email us below and tell us how it has affected you. In particular, if you are a doctor or physiotherapist who has treated anyone with this disability, also, please contact us. You may recognise me from the commercials for the "Down Every Street Appeal".

4. AVENUES AVENUES. A National Support Group for arthrogryposis Multiplex Congenita.AVENUES is support group for individuals, families, and http://sonnet1.sonnet.com/avenues/

AVENUES A National Support Group for Arthrogryposis Multiplex Congenita AVENUES is support group for individuals, families, and medical professionals interested in Arthrogryposis Multiplex Congenita (AMC). AMC is a congenital condition characterized by multiple joint contractures. AVENUES publishes a newsletter twice a year so that those who have experience with AMC can share their knowledge with others. Currently, the newsletter is mailed to nearly 1,000 subscribers. Available from AVENUES A directory of families interested in corresponding with others A directory of therapists with a special interest in AMC An annotated bibliography on AMC A pamphlet on AMC: "What It Is and How It Is Treated" A Spanish Version of the AMC pamphlet" A pen-pal list for young correspondents Audio cassettes of the Duncan Seminar on AMC A list of Support Groups for Arthrogryposis A list of Arthrogryposis Clinics A list of doctors with an interest in Arthrogryposis Past Issues of the Avenues Newsletter ... Other Sites For more information AVENUES can be reached at: avenues@sonnet.com

5. Arthrogryposis Pamphlet WHAT IS arthrogryposis? Published by AVENUES A National Support Groupfor arthrogryposis Multiplex Congenita WHAT IS arthrogryposis? http://www.sonnet.com/avenues/pamphlet.html

WHAT IS ARTHROGRYPOSIS? Published by AVENUES A National Support Group for Arthrogryposis Multiplex Congenita WHAT IS ARTHROGRYPOSIS? "Arthrogryposis" (Arthrogryposis Multiplex Congenita) is a term describing the presence of multiple joint contractures at birth. A contracture is a limitation in the range of motion of a joint. In some cases, few joints maybe affected and the range of motion may be nearly normal. In the "classic" case of Arthrogryposis, hands, wrists, elbows, shoulders, hips, feet, and knees are affected. In the most severe cases, nearly every body joint may be involved, including the jaw and back. Frequently, the joint contractures are accompanied by muscle weakness which further limits movement. Arthrogryposis is relatively rare, occurring in perhaps one in 3,000 births. CAN ARTHROGRYPOSIS OCCUR AGAIN IN THE SAME FAMILY? In most cases, Arthrogryposis is not a genetic condition and does not occur more than once in a family. In about 30% of the cases, a genetic cause can be identified. The risk of recurrence for these cases varies with the type of genetic disorder. WHAT CAUSES IT?

6. Arthrogryposis Die Seite informiert ¼ber arthrogryposis (AMC), eine angeborene Erkrankung die durch eine unterschiedlich stark ausgepr¤gte Gelenksteife bestimmt wird. Charakteristisch ist eine Gelenkverkr¼mmung an H¤nden und/oder F¼Ÿen. http://arthrogryposis.de/Arthrogryposis/arthrogryposis.html

Letzte Änderung: 28.03.2003 webmaster@iga-ev.de INTERESSENGEMEINSCHAFT ARTHROGRYPOSIS e. V. Gästebuch Zu wenig bekannt Aufgrund der Seltenheit der AMC ist der allgemeine Kenntnisstand über Diagnose und Therapie recht dürftig. Dies führt häufig zu zu spät einsetzender Behandlung und manchmal zu funktionell wertlosen, rein kosmetischen Operationen. Oft bleibt es Glücksache, ob ein Kind mit AMC rechtzeitig in die richtigen Hände kommt. Die Seltenheit der AMC bringt es mit sich, dass betroffene Eltern in näherer Umgebung niemanden mit einer ähnlichen Behinderung kennen. So wird Erfahrungsaustausch und gegenseitige Unterstützung kaum möglich. Was ist Arthrogryposis (AMC) Bei der Arthrogryposis multiplex congenita (AMC) handelt es sich um eine frühkindliche Entwicklungsstörung im Mutterleib, die sich etwa in der 8. bis 11. Schwangerschaftswoche abspielt und durch eine neurologische Fehlentwicklung gekennzeichnet ist. Infolgedessen kommt es zu einer gestörten Muskelentwicklung (bindegewebige Umwandlung, Hypoplasie, Nichtanlage), welche die funktionsgerechte Ausformung der Gelenke behindert. Geschädigter Bewegungsapparat Das äußere Krankheitsbild wird durch eine unterschiedlich stark ausgeprägte Gelenksteife bestimmt, wobei in leichten Fällen nur einzelne periphere Gelenke betroffen sind, in schweren Fällen fast alle Extremitätengelenke, Kiefergelenk und Wirbelsäule. Der Bewegungsapparat ist folglich in unterschiedlichem Ausmaß geschädigt.

7. Claymartin.com:~ Arthrogryposis: Information, Support And Understanding Information, support, and understanding of this disease. A message board for asking questions and sharing. http://www.claymartin.com

Search Topics All Topics happy and fun stuff Questions from our visitors Research The latest news your personal stories Create an account Home Topics Guestbook Your Account ... Forum Main Menu Home Topics Stories Web Links ... Webmail login Other Options Contact FAQ Forum Guestbook ... ePOP Who's Online There are currently, 1 guest(s) and member(s) that are online. You are Anonymous user. You can register for free by clicking here Medline Search Enter your keyword Definitions what is arthrogryposis Amazing Amy survived against all odds! Posted by Dad on Sunday, March 16 @ 11:09:53 PST (3 reads) Topic your personal stories Anonymous writes: "When I was pregnant I was told that my baby had such bad AMC that it would not surviuve, the DR told me that because the hands were fixed across the chest the lungs would not have developed, I couild not terminate as I knew I would love my baby how ever it turned out. On the 9th October I went to have a cesearean, Amy was born and looked like a ball, her hands were across her chest and her feet touching her head. We were advised that she may not make it through the night but she did, now at four months old she has slightly curvered wrists, index finger which does not move, ne almost straight leg and the other can almost straighten, she has feeding problems but is a very healthy baby. She is developing at the same rate as an ordinary baby, I enjoy doiing her physio as the results are so far very rewarding, if any wishes to contact me please do so at pinkypenfold@hotmail.com Amy is lucky, there are children a lot worse than her"

8. Emilys_arthrogryposis Hello my name is Emily and I was born w/ arthrogryposis. http://www.geocities.com/joni22_20002000/emilys_arthrogryposis.html

Emily's Arthrogryposis Hello My name is Emily and I was born w/ Arthrogryposis. When I was born my Mommy and Daddy did not know that I was going to be born w/ Athrogryposis (AMC)! I am only 2 and a half but let me tell you my story and a little bit about my family...... This is me, 3 days old. The first day that my Mommy got to see me! The day I was born, September 8, 1998, was a shock to everyone. My Mommy was exspected to have a healthy baby. Shortly after birth I had to be life flighted to Childrens Hospital. I was in bad shape... Let me tell you about my disability! I was born witha very rare birth defect known as Arthrogryposis. Along with having AMC I also had Clubbed hands and feet, arms fixed in a straight possition, and I had a hole in my belly that my bowels were out through it is know as Gastroskesis. My gastro was fixed w/in hours of birth and all went well and I recovered very well. Then in January of 2000 I had my clubbed feet repaired and they work great now. The doctors told my Mommy and Daddy that I would never sit on my own and my intelligence would be below normal , I would never walk on my own and I would never be able to use my arms! Wow did I fool all of those doctors! Granted at first I was a bit behind at first, but my Mommy and Daddy worked w/ me all of the time and I came through and amazed everyone. When I was 8 months old I sat up on my own. And the same day I learned to roll over all on my own That was a big day for me, I learned to do alot that day!.

9. Sophiesarthrosite This is a site about Sophie who has had to endure life with a condition called arthrogryposis. http://mysite.freeserve.com/sophiesarthrosite

10. The Precious Child Above Is Colby Tyler Havard Personal site with information on AMC. http://www.amc-info.org

The Precious Child above is Colby Tyler Havard. Colby has "Arthrogryposis Multiplex Congenita," a rather rare disease which occurs in about 1 out of every 3,000 births. But Colby, aside from his disease, is himself quite rare. Colby presents the "classic" example of how this disease afflicts its victims, but from the night he was born he has shown the world that he is in all actuality an extraordinary gift from God! Colby was not even expected to live through the night of his birth. Not only did he live, but he has become the supreme inspiration for everyone who has come into contact with him. He is an ever constant joy and delight! Now at seven years old, I truly do not believe that Colby even "realizes" that he is different, and even if he does he certainly refuses to be limited by that difference. He has virtually no movement in his arms and hands. He is still in diapers. He cannot, and will NEVER walk. But it is nearly impossible to keep up with him. Colby moves by "ooching" on his behind and "rolling" like a tumble-weed. If he decides he wants to move to the other side of a room, or go to the end of the house, HE GOES! st century's equivalent of the Renaissance Man. He is also quite the ladies' man.

11. Victoria's Story With Arthrogryposis Living with arthrogryposis. http://members.aol.com/_ht_a/crazyus5/myhomepage/family.html

Victoria's Story with Arthrogryposis Living with Arthrogryposis Victoria was born full term weighing 5 IBs 2.5 ounces, on April 1st 1997, born with Arthrogryposis. For those of you who may not know, arthrogryposis is the precense multiple joint contractures. Victoria had them, and at every joint ex. her ankles, knees, hips, shoulders, elbows, wrists, and fingers all ten... Arthrogryposis is corrected by therapies, braces, splinting and surgery as a last resort. Victoria was transferred to Miami Childrens Hospital when she wa only 3 hours old was Victoria's 1st surgery was when she was 7 months old she had a ten hour surgery with 2 surgeons. An orthopedic and a plastic/hand specialist. They both worked together in the O.R. She had a bilateral club foot release and a right thumb release with skin graphs from her groin area. Pins were placed in her hand at 2 places and her legs. She wore casts for 6 weeks. Our Favorite Family Activities Our Future Plans Fun Family Links See more family home pages "You've Got Pictures" My Favorite Products Download AOL Instant Messenger page created with 1-2-3 Publish

12. Arthrogryposis Clinics arthrogryposis CLINICS (1125-2000) The Hospital for Joint Diseases301 East 17th Street New York, NY 10003 212-598-6250 Harold http://www.sonnet.com/avenues/clinic.html

ARTHROGRYPOSIS CLINICS The Hospital for Joint Diseases 301 East 17th Street New York, NY 10003 Harold van Bosse, M.D. and Joan Gold, M.D., Directors A. I. DuPont Hospital for Children P.O. Box 269 Wilmington, DE 19899 Dr. S. Jayakumar, Director The University of Michigan MOTT Children's Hospital I D 204 University Hospital Ann Arbor, MI 48109-0042 or Virginia Nelson, MD, Clinic Director Shriner's Hospital Twin Cities Unit 2025 East River Rd. Minneapolis, MN 55414 Kathy Engstrom, RN, Clinic Coordinator Shriners Hospital for Children 6977 Main Street Houston, TX 77030 (713) 793-3765 (new patient applications, Houston) 1-800-853-1240 (new patient applications, other Texas locations) 1-800-237-5055 (new patient applications, outside Texas) (713) 793-3702 (Cathy Moniaci, RN, MS, Director of Patient Care) website: www.shc-houston.org email: rwendler@shrinenet.org University of New Mexico Carrie Tingley Hospital 1127 University Blvd. N.E. Albuquerque, NM 87102 Judy Larson, Coordinator Shriner's Hospitals for Children, Los Angeles 3160 Geneva Street Los Angeles, CA 90020-1119

13. AVENUES A support group for individuals, families, and medical professionals interested in arthrogryposis Multiplex Congenita (AMC). http://www.sonnet.com/avenues/

AVENUES A National Support Group for Arthrogryposis Multiplex Congenita AVENUES is support group for individuals, families, and medical professionals interested in Arthrogryposis Multiplex Congenita (AMC). AMC is a congenital condition characterized by multiple joint contractures. AVENUES publishes a newsletter twice a year so that those who have experience with AMC can share their knowledge with others. Currently, the newsletter is mailed to nearly 1,000 subscribers. Available from AVENUES A directory of families interested in corresponding with others A directory of therapists with a special interest in AMC An annotated bibliography on AMC A pamphlet on AMC: "What It Is and How It Is Treated" A Spanish Version of the AMC pamphlet" A pen-pal list for young correspondents Audio cassettes of the Duncan Seminar on AMC A list of Support Groups for Arthrogryposis A list of Arthrogryposis Clinics A list of doctors with an interest in Arthrogryposis Past Issues of the Avenues Newsletter ... Other Sites For more information AVENUES can be reached at: avenues@sonnet.com

14. AMC Info Information and links, provided with the hopes of helping others in their search for a better understanding of arthrogryposis multiplex congenita. http://members.aol.com/amcchat/amcinfo.htm

15. Home Translate this page INTERESSENGEMEINSCHAFT. arthrogryposis eV. Hier gehts zum Forum. INTERESSENGEMEINSCHAFTarthrogryposis eV (IGA). Petra Schwaben ( 1. Vorsitzende) Rupert-Mayer-Str. http://arthrogryposis.de/

Letzte „nderung: 28.03.2003 webmaster@iga-ev.de INTERESSENGEMEINSCHAFT ARTHROGRYPOSIS e. V. G¤stebuch F¼r Arthrose bitte hier klicken! Herzlich Willkommen Welcome Neu! Rubrik PFLEGEVERSICHERUNG Anmeldeformulare zur Familientagung Vorl¤ufiges Tagesprogramm der 8. Familientagung finden Sie unter Termine! INTERESSENGEMEINSCHAFT ARTHROGRYPOSIS e. V. (IGA) Petra Schwaben ( 1. Vorsitzende) Rupert-Mayer-Str. 15 D-63741 Aschaffenburg Telefon 06021 87089 Fax 06021 4489674 eMail: 1.vorsitz@iga-ev.de

16. Kassandra's Arthrogryposis Page For those that do not know me and about my disability, I will tell you my story. http://hometown.aol.com/arthrogryposisc/index.html

17. EMedicine - Arthrogryposis : Article By Harold Chen, MD, MS, FAAP, FACMG arthrogryposis arthrogryposis, or arthrogryposis multiplex congenita, comprisesnonprogressive conditions characterized by multiple joint contractures found http://www.emedicine.com/ped/topic142.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Arthrogryposis Last Updated: November 1, 2001 Rate this Article Email to a Colleague Synonyms and related keywords: arthrogryposis multiplex congenita, multiple congenital contractures, multiple congenital joint contractures AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Harold Chen, MD, MS, FAAP, FACMG , Chief, Professor, Department of Pediatrics, Section of Perinatal Genetics, Louisiana State University Medical Center Harold Chen, MD, MS, FAAP, FACMG, is a member of the following medical societies: American Academy of Pediatrics American College of Medical Genetics American Medical Association American Society of Human Genetics , and Teratology Society Editor(s): James Bowman, MD , Senior Scholar of Maclean Center for Clinical Medical Ethics, Professor Emeritus, Department of Pathology, University of Chicago; Robert Konop, PharmD

18. Arthrogryposis Multiplex Congenita Library A B. arthrogryposis Multiplex Congenita. Canadian arthrogryposisSupport Team CAST 365 Fiddlers' Green Rd. S. Ancaster http://www.familyvillage.wisc.edu/lib_arto.htm

Arthrogryposis Multiplex Congenita Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Arthrogryposis Multiplex Congenita" Who to Contact Avenues-Arthrogryposis Multiplex Congenita PO Box 5192 Sonora, California, USA 95370 E-mail: avenues@sonnet.com Avenues is a national support group that provides education and networking for parents and medical professionals concerned with Arthrogryposis. They have local chapters, with a directory available, and will provide parent-to-parent matching. Avenues publishes a bi-annual newsletter, Avenues , for a cost of $10.00 and a brochure, "What is Arthrogryposis?" This is offered in English and Spanish. Additionally, they have a new parent packet, that includes the newsletter, and brochure. Avenues has a bibliography of abstracts that are available to members and audio Cassettes for distribution. They collect information on physicians and researchers who treat/study the condition and disseminate this information to its membership. They also offer a resource packet that includes interested doctors, therapists, families, pen pals, support groups and clinics. Canadian Arthrogryposis Support Team [C.A.S.T.]

19. Arthrogryposis Multiplex Congenital arthrogryposis Multiplex Congenital OnLine Discussion Groups. MailingLists. AVENUES arthrogryposis Multiplex Congenital mailing list. http://www.familyvillage.wisc.edu/lists/Arthrogryposis_Multiplex_Congenital.htm

Arthrogryposis Multiplex Congenital On-Line Discussion Groups Mailing Lists AVENUES Arthrogryposis Multiplex Congenital mailing list. To subscribe send an e-mail message to: MAISER@hoffman.mgen.pitt.edu In the body of the message type: Subscribe Avenues Chatting If you are interested in corresponding electronically with others interested in arthrogryposis or in participating in on-line "chats", contact gabyh@aol.com Bulletin Board AMC Bulletin Board If you know of an on-line discussion group that should be added to the list, please send a note to Linda Rowley at: rowley@waisman.wisc.edu Last updated 4-April-1997 by rowley@waisman.wisc.edu.

20. Kassandra's Arthrogryposis Page For those that do not know me and about my disability, I will tell you my story.Category Health Conditions and Diseases Personal Pages......Kassandra's arthrogryposis Page, Hello My Name is Kassandra Ahuero. The doctor said I think she has a rare condition called arthrogryposis Multiplex Congentia. http://hometown.aol.com/arthrogryposisc/

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