Arthrogryposis Multiplex Congenita - Understanding a Rare Bone Disease

Arthrogryposis, which is commonly known as Arthrogryposis Multiplex Congenita, is an inborn condition typified by joint contractures and muscle weakness. The bones are in a fixed position. There is a limited range of movement, and the affected joints are usually curved. In fact, the term "Arthrogryposis" literally translates to "curved or hooked joint." The ground rules for this disorder are loose. There are several different types of Arthrogryposis, none of which are easy to pronounce. You would be hard pressed to find two cases that are exactly alike.

My case is severe. I have contractures in my hips, hands, legs, feet, and shoulders. Walking is out of the question. And yet there are people with Arthrogryposis who can take care of themselves and lead perfectly normal lives. Some merely have bowed feet. Arthrogryposis is a difficult condition to explain and diagnose. Doctors usually get it wrong the first time around. My parents were told that I wouldn't live past 2 years of age. While I do have the maturity of a toddler, I seem to have proven the doctors wrong. Most people with Arthrogryposis have an average life expectancy. It all depends on how severe their symptoms are.

Arthrogryposis can be caused by many factors. I was malformed (or "owned," if you prefer) by a lack of amniotic fluid and "fetal crowding," the result of there not being enough room in the uterus. It can also be caused by spinal abnormalities, poorly developed tendon linings, and decreased fetal movements. Arthrogryposis babies are normally delivered via a c-section. My arm was broken as I was being pulled out of my mother. One-third of diagnosed cases are fatal. This occurs when the respiratory system is beset by extreme deformities.