Mikaela Frances Jane

A website for our family and friends to keep up with Mikaela and her Arthrogryposis.
Also to help families find their way through this journey.

 
 

"Strength does not come from physical capacity. It comes from an indomitable will." - Gandhi

 
 
 
 

What is Arthrogryposis?



Arthrogryposis, is also known as Arthrogryposis Muliplex Congenita or AMC.

There are over 400 different types of Arthrogryposis, with differing signs, symptoms and causes. In some cases, few joints may be affected and may have a nearly full range of motion. In the most common type of Arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe types, nearly every joint is involved, including the jaw and back. Arthrogryposis is relatively rare, occurring in approximately one in 3,000 births. Mikaela being just arms makes her one in 200,000 births. And in Mikaela's case, it was ruled out as non-genetic. 

The word is broken up in Latin, literally means "Curved Joint Disease"

Arthro - Joints
Gryp - Curved
Osis - Diseased or Abnormal Condition

AMC is broken up like so:

Arthrogryposis - Curved Joint Disease
Multiplex - Multiple Parts
Congenita - Evident at Birth

It is a non-progressive disease.

Here is a list of resources you can check out to find out more about Arthrogryposis:

Websites:
en.wikipedia.org/wiki/Arthrogryposis

www.amcsupport.org

www.avenuesforamc.com

And where it all began for Melanie, when she came across a website about a little girl named Abby.
www.forabby.com

Books:
Arthrogryposis: A Text Atlas
Here is a website where you can download this book for free as a PDF:
Arthrogryposis: A Text Atlas (PDF)


Mikaela meets Dr. Hall

Ok, this here is probably the biggest, and most important point of our lives since Mikaela was born. This is the moment we got to sit down and meet Dr. Judith Hall, a geneticist who specializes in arthrogryposis. She is by far the leading expert in the field and we had the incredible opportunity to meet her at the 4th annual AMC convention in Philadelphia. She was able to answer so many questions for us about our daughter, and a lot of questions I'm sure you may have had about AMC. Not only does she talk about Mikaela's condition, she informed us about how most likely she will grow up, and about different types of arthrogryposis in general. Because of Dr. Hall, we found that Mikaela has a specific type of arthrogryposis called "Amyoplasia" in upper limbs only. If you ever wanted to know general answers about arthrogryposis, and find out more about what Mikaela has, this is the video for you to watch. It's approximately 33 minutes: