Aug 24, 2002 11:32 PM
8885 Views
(Updated Dec 15, 2002 10:30 AM)
https://hometown.aol.com/bpo5622338/myhomepage/photo.html
link to my photo page where it shows pictures of myself, mom and brother.
I would like to try and explain the rare disease that I was born with. Some people look at me wondering what was wrong with my hands and other parts of my body.
No, I don't have Polio I was born with ARTHROGYPOSIS MULTIPLEX CONGENITA AMC That sounds like Greek to me and probably to some of you readers.
AMC, is a rare disorder that is present at birth congenital is charactrized by reduced mobility of many joints of the body.
Impairment of mobilty is due to the overgrowth [proliferation] of fibrous tissue in the joints[fibrous ankylosis] their are many different types of AMC, and the symptons vary widely among affected indivduals.
In most common form of AMC, the range of motion of joints in arms and legs is limited and fixed. Other findings may included inward rotation of shoulders, abnormal extension of the elbows, and bending of the wrists, and fingers. In addition, the hips may be dislocated and the heels of the feet may be bent from the midline of the leg while the feet are inwardly bent at the ankle [clubfoot].
The cause of AMC is unknown. Most types of AMC are not inherited; however, a rare autosomal recessive form of the disease has been reported in one large inbreed Arabic kindred in Isreal.That the form I have, my Mother and Brother also have AMC.
Signs and Symptoms: The deformities are present at birth. Soft tissues webbing may have delvoped over the flexed joints, and the muscles may be hypoplastic.The long bones of the skeleton are excepitionally slender, but skeltal x-rays are other wise normal. Cleft palate and crptorchidism
may be present. Intelligence usally is normal. The cause is unknown.
Most types of AMC is not hereditary, and male and females are affected equally.
At birth I was diagnosed with AMC and was in and out of the Oklahoma City Oklahoma children hospital in Oklahoma City Oklahoma and later, Shriners hospital in Saint Louis, Missouri as far back as I can remember.
I don't remember much until I was eleven years old. I had thirty operations all in all. I have had one by pass surgery, hips, spinal and they cut on my hands off and then sewed it back on again. They did sugery on my club feet to tried to straighten my toes, stuck pins in each one. I was scared to death they was going pulled them out while I was awake. But when they pulled them out it didn't hurt.
My brother Mike was also born with it and had as many operations as I did. At one time we were at the Shriners the same time for Christmas. We had operations the same day. My parents, my Grandparents came and visit us that year.
We have had our shared of operations and one day when were of age we told them enough was enough or they might be trying to fixed our hands and feet today. Seventeen is the last age limit I believe is at Shriners. At the time I was there anyway. I had them stop in 1973/74 when I was fifteen and starting 10 th grade. I started school in a wheel chair from my last operation there, the pins in my toes to tried to straighten them out, which didn't work no fault
of theirs, it just didn't work. I went back to school after
Christmas break walking and no longer had to go back to Shriners.
My Mother Dorothy was in the childrens hospital in Oklahoma City, Oklahoma and had her share of operations in 1940's. She was not allowed back in the public or private schools after sixth grade. They didn't at that time have special education in 1940's.
