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.

Scoliosis is a common symptom of Arthrogryposis. My spinal curve required surgical intervention. My vital organs would have been crushed if the curve wasn't corrected. In 1997, I went under the knife for 12 hours. A steel rod was fused to half of my spine. The upper half was left curved so that my neck movement was not impeded. I do almost everything with my head, and I can't afford to lose what little mobility I have. Surprisingly, the recovery time was quick. The curve is now corrected, and since I'm done growing, it is unlikely that my scoliosis will worsen.

There is an upside to Arthrogryposis. It does not cause mental retardation or delays in thought and speech. Most people assume that I am mentally handicapped when they meet me. At times, I view my cognitive clarity as a drawback. There is nothing worse than being aware of how handicapped you are when you are as handicapped as I am. I feel pain, both physical and emotional. Every fellow "case" that I've met has had a positive outlook on life. I have yet to overcome cynicism. Depression and Arthrogryposis are a terrible twosome to deal with.

I know what you're thinking. Let me go ahead and address it. After all, it's the question that I get asked the most. Yes, it works. Luckily, the chances of my Arthrogryposis being hereditary are minimal. Amyoplasia, the most prevalent type of Arthrogryposis, cannot be passed down through your family tree. Distal Arthrogryposis, which only affects the hands and feet, does have genetic roots. I seem to be in the clear. I should warn you that Arthrogryposis can be transmitted through words, so if you've read this far, I probably just gave it to you. Sorry.