Information in English
Arthrogryposis multiplex congenita, or short AMC, is a condition of stiff joints from birth on which in most cases affects multiple joints. It is a specific form of a physical handicap. AMC is not cureable, but it is not progressive.
What is Arthrogryposis (AMC)?
By Arthrogryposis multiplex congenita (AMC) is understood a state of stiff joints from birth on. This stiffness can be limited to some joints; but also multiple, in extreme cases, even all joints can be affected. Nerves, muscles, tendons and most of all the joint capsules are affected.
The term AMC describes a clinical picture that can be extremely variable.
The causes of AMC are mostly resulting from disorders in the infantile development during pregnancy that takes place approximately in weeks 8 to 11 of pregnancy and is characterized by a neurological aberration. Consequently the results are a disturbed development of the muscles (connective tissue, hypoplasia, non-development) which constricts the development appropriate to function of the joints. In rare cases there are also genetic causes.
Therapy
Highest priority for therapy is the desired function; anatomical-aesthetical considerations have to be subordinated. The child shouldbe assisted to undergo, as far as possible, a regular development according to its age. Each method of therapy has to consider the psychical condition of the child. Too much of therapy can be as harmful as too little.
Physiotherapy and occupational therapy
Important therapeutical success can be achieved by physiotherapy and occupational therapy. Treatment should be started as soon as possible.
By manual therapy stiffened joints can be loosened step by step. Additionaly treatments of neurological basis (e.g. concepts of Vojta and Bobath) are being undertaken that stimulate the neuromuscular activities, if present.
The intensity of therapy is especially great in the first years. Later it can be reduced without considerable advantages. A basic program should secure the established success in long-term.
Orthopedic aids
Despite a lot of physiotherapy not all children can be enabled to walk. Then additional measures have to be undertaken. These are the use of orthopedic aids such as splints and/or supporting appatuses or even surgery.
After surgical corrections the result achived can be stabilized by splints. Children with very weak muscles can learn to walk with lightweight splints. Redressing splints are not suitable to correct defective joint positions.
Surgery
Surgery needs to be considered,
- if the child is handicapped by its joint positions in a way that it cannot use its hands, arms or legs sufficiently
and
- if physiotherapeutical treatment has been exhausted for the affected joint.
Defective positions shall be corrected or eliminated to an extend that the child can use its weak muscles according to function.
Supreme objective of all orthopedic treatment and surgery is to improve the function of the joints and to enable the child to lead a life as autonomous and independent as possible.
Interessengemeinschaft Arthrogryposis e.V.
The Interessengemeinschaft Arthrogryposis (IGA) e.V. – Community of Interest for Arthrogryposis – was founded in March 1992. Its mission is to be the lobby of all those concerned with AMC in the German-speaking countries.
Our mission:
- Support for parents and affected individuals
- Information of the public, authorities, institutions, doctors and clinics
- communication of the latest knowledge
- encourage scientific research
- get involved for integration of people with disabilities
Our activities:
- a network of contact persons all over the Germany, Austria and Switzerland
- publications, e.g. magazine, brochures etc.
- events, e.g. family meetings, adults meetings, regional meetings
- in touch with support groups in Germany and with AMC groups abroad
All this needs active members and costs money. That’s why we need your support. Everyone can become a member – as an affected person or as a supporting member. The association exclusively and directly pursues non-profit and charitable purposes of public utility. Donations are always welcome.
Regional Contacts
The Interessengemeinschaft Arthrogryposis e.V. has network of regional contacts all over Germany, Austria and Switzerland. The latest list of contact persons can be found at www.arthrogryposis.de on the Internet.
Contact person for international inquiries:
Heribert Wettels, Vice Chairman
D-88471 Laupheim
Phone +49 7392 705696
heribert.wettels@arthrogryposis.de
Please also visit our forum in English.
Patron
Dr. med. Johannes Correll
Orthopädie am Marienplatz
Weinstraße 3, D-80333 München
Phone +49 89 242944-0, Fax +49 89 29160815
Interessengemeinschaft Arthrogryposis e.V.
Incorportated at the German district court Bad Säckingen, VR 537
