Orphans with Arthrogryposis

There are kids with Arthrogryposis all over the world who wait for a family to call their own. Every child should have a Mama and Papa to love them. Sadly many kids will never know the love of a family as they will live out their shortened lives in institutions. The children posted here are from Reecesrainbow.com If you can't adopt, you can donate to their grants on reecesrainbow.com Don't leave them to die in institutions.

Saturday, August 21, 2010

Arthrogryposis Awareness

Arthrogryposis Awareness

Arthrogryposis Multiplex Congenita (AMC) means: Multiple Joint Contractures Present at Birth

A joint contacture is a joint that lacks normal range of motion or in other word is stiff or curved.

Its an umbrella term, which means AMC can be part of many syndromes & other underlying conditions.

More then 3 joints have to affected in 2 areas of the body to have a diagnosis of AMC
It occurs 1 in 3,000 live births

All joints can be affected including the spine & jaw

Joint contractures develop because the unborn baby fails to move properly. Movement is vital to proper joint development

Cognitive development (intelligence) is almost always normal

There are approx. 400 types of Arthrogryposis

About 1/3 of cases of AMC are Amyoplasia type which is non-genetic & sporadic in the population. There is no known cause for Amyoplasia.

Most Distal Arthrogryposis types & most syndromes (like Escobar, Sheldon-Hall) are genetic in origin

20-30% of babies born w/ AMC will die in the newborn period because they have a lethal genetic type or they severe central nervous system dysfunction

Some individuals do not have an identified type

Common joint contractures include: Clubbed feet or vertical talus, extended or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in-palm), fingers are fisted or extended

There is no cure for Arthrogryposis, just treatment to reduce the severity of the joint contractures & increase the function level of the individual.

Treatment often includes: Stretching the joints multiple times per day, serial casting, tendon releases & lengthening, osteotomies, splinting & bracing, external fixators, physical, occupational & speech therapy.

Despite the fact there is no cure most kids with Arthrogryposis grow up to be independent & successful adults

More research needs to be done in the cause of Amyoplasia, mapping the genes in genetic types & long-term outcome studies need to done for common surgical procedures in this diagnosis.

To learn more about Arthrogryposis: www.amcsupport.org

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