"My goal is to raise awareness of AMC and AMCSI"

Arthrogry-whatsis?

Arthrogryposis Multiplex Congenita (AMC) means "Multiple Joint Contractures Present at Birth".  A joint contracture is a joint that lacks normal range of motion or in other words is stiff or curved.  AMC can be part of many syndromes and other underlying conditions.  More than 3 joints have to be affected in 2 areas of the body to have a diagnosis of AMC.  It occurs in approximately 1 in 3000 births.  All joints can be affected including the spine and jaw.  Joint contractures develop because the unborn baby fails to move properly.  Movement is vital to proper joint development.  There are approx. 400 types of Arthrogryposis.  About 1/3 of cases of AMC are Amyoplasia type, which is non-genetic and sporadic in the population.  There is no known cause for Amyoplasia.  Some AMC types and syndromes (Escobar, Sheldon-Hall, etc.) are genetic in origin.  There is NO cure for Arthrogryposis, just treatment to reduce the severity of the joint contractures and increase the function level of the individual.  Treatment includes:  Stretching the joints multiple times per day, serial casting, tendon releases and lengthening, osteotomies, splinting and bracing, external fixators, physical, occupational and speech therapy.  More research needs to be done into the causes of Amyoplasia, genes need to be mapped for genetic types, and long-term outcome studies need to be done for the common surgical procedures preformed.

We knew none of this on January 7th 2008 when our daughter Grace was born.  We spent 9 days in the neonatal intensive care unit and were discharged without any understanding of why she didn't move her arms or why her hands and foot were "crooked".  We received excellent medical care, they were just unaware of AMC!!!  We began physical therapy, splinting, and serial casting for her clubbed foot, but WE WERE LOST.

That all changed when we found our support group www.amcsupport.org (AMCSI).  We met others who had been through the same situation, we got all the information we could process, and we formed friendships with other parents and adults with AMC.  When Gracie was 6 months old we attended AMCSI's annual convention in Ohio.  We met the people we had been talking with online, their awesome kiddos, and amazing adults with AMC!  We found a second family!  We got a glimps into what Gracie's future could hold and knew she would be o.k. (and so would we!)  We participated in medical workshops, and met a team from the Philadelphia Shriners hospital who specialize in AMC, they quickly became Gracie's orthopaedic surgeons.  We now travel to Pennsylvania on a regular basis for care. 

More information can be found at www.amcsupport.org and a medical text written for parents and professionals can be downloaded here: The Arthrogryposis Text Atlas

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