Arthrogryposis multiplex congenita (AMC) is a term used to describe a group of congenital conditions characterized by joint contractures in two or more body areas. While the precise cause may be unknown for some individuals, causes are variable and may include genetic, parental and environmental factors, as well as abnormalities during fetal development. Individuals with AMC have limited joint movement, with or without muscle weakness, in the involved body areas.
Contractures vary in distribution and severity, do not progress to previously unaffected joints, but may change over time due to growth and treatment. Spinal deformities may be present at birth or develop throughout childhood and adolescence. Depending on the underlying diagnosis, other body systems such as the respiratory, gastro-intestinal, genito-urinary and central nervous system may be affected. Cognition may be affected if the central nervous system is involved; sensation is usually intact. The impact on mobility, activities of daily living and participation is variable.
- This is a rare disorder occurring in 1 out of every 3,000 live births; and the incidence of true amyoplasia occurs in 1 out of every 10,000 live births.
- It is reported that amyoplasia comprises 43% of reported cases.
- No racial tendency is present.
- Males are more affected in X-linked recessive disorders; otherwise, females and males are equally affected.
- Arthrogryposis is detected at birth or in utero using ultrasound.
- As many as 150 syndromes have similar features with arthrogryposis.
- The majority of individuals thrive with an average or above average intellect.
- The life span of affected people depends on the severity of the syndrome and associated malformations, but is often normal.
The Amazing Curvy Kid by Mark with TAGNZ Surrender To Being Different by Lisa PaneBooks on Arthrogryposis Multiplex Congenita (AMC)
Arthrogryposis: A Text Atlas by Lynn T. Staheli et al.
Published 1998, a detailed medical atlas with insights on AMC management, useful for parents seeking in-depth understanding.
Released 2023, a children’s book by an AMC advocate, helping parents explain the condition to kids and families.Sammy’s Physical Therapy Adventure by Michael L. Fink
Published 2016, a coloring/activity book for kids with AMC, supporting parents in therapy discussions.
Released 2022, a memoir by an AMC adult, offering parents perspective on resilience and adaptation.
– a mix of practical advice, emotional support, and educational tools to help families understand AMC, manage joint contractures, and connect with support networks. Shriners Children’s KidsHealth by Nemours Nationwide Children’s Hospital Johns Hopkins Medicine Nationwide Children’s Hospital National Institute of Neurological Disorders and Stroke (NINDS)Resources for parents of children with Arthrogryposis Multiplex Congenita (AMC)
Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI)
A nonprofit providing educational materials, annual conferences, and community support for parents of children with AMC.
Provides care guides, therapy info, and family support for kids with AMC across their U.S. network.
A parent-friendly guide on AMC symptoms, treatments, and daily care strategies for children.
Features resources on AMC treatment, therapy, and family support from a leading pediatric center.HealthyChildren.org (American Academy of Pediatrics)
Offers expert advice on AMC care, therapy, and developmental support from pediatricians.
Detailed resource on AMC diagnosis, therapy, and surgical options, with a specialty clinic focus.
Features resources on AMC treatment, therapy, and family support from a leading pediatric center.
Provides scientific info on AMC causes, joint contractures, and treatment options for parents.
Our children with Arthrogryposis Multiplex Congenita (AMC)
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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