Today is arthrogryposis multiplex congenita (AMC) awareness day. Many of you know that AMC is the rare condition sweet Katee was born with. Before Katee's referral, I had never heard of AMC and was clueless as to what it was. In fact, I found the word pretty scary.
In honor of AMC awareness day, I thought I would share a few facts about arthrogryposis in hopes that your eyes would be opened to this condition and that you would see how incredible these kids truly are (especially if you are considering adoption!).
Arthrogyrposis means "multiple joint contractures present at birth". This condition causes some of Katee's joints to be contracted, or stiff and lacking normal range of motion. AMC only occurs in 1 out of every 300,000 births and is caused by an unborn baby not moving properly during fetal development.
Common joint contractures include clubbed feet, extended or flexed knees, dislocated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, and fingers fisted or extended.
Arthrogryposis is not progressive, meaning that it is as severe as it's going to get at birth. However, it is regressive in nature. This means that even after effective treatment, the contractures can re-occur. For example, Katee's feet will most likely go back into a clubbed position during a major growth spurt and we will need to cast them again in the future. Post-treatment bracing is important to prevent relapse, but even strict bracing cannot stop all relapses.
Arthrogyrposis can cause height and weight deficits. Children with AMC tend to be on the low end of the growth charts for weight (or in Katee's case, not on the chart at all!). As adults, they tend to be 4-8 inches shorter than familial height and weigh 10-20 pounds less than their peers.
While there is no cure for AMC, many people with arthrogyrposis will walk, but some will need a wheelchair for effective mobility. Those who walk may need braces or walkers/crutches.
Most children with AMC grow up to be independent and successful adults. I am already amazed by how Katee figures out ways to do things and get around.
We are so glad she is ours!!
To learn more about AMC: www.amcsupport.org
2 days ago