Why I Made a Website About My Rare Condition


I have arthrogryposis multiplex congenita (AMC). I was born with clubfeet, flexed knees, flexed hips, flexed elbows, and wrists. I have a history of scoliosis which caused intractable pain resulting in the need for orthopedic surgery. Over the years I have had 17 surgeries and countless hours of physical therapy to help make me more mobile and ultimately have the opportunity to have long term employment.

Due to my anterior horn cell disease and subsequent body changes, I do not have the strength, endurance, nor the pain management I had in my younger years. I now have limited tolerance for sitting, standing, and walking. There is no evidence in the literature that adults with arthrogryposis will get stronger or more mobile with age.

One in 3,000 are affected by arthrogryposis and there are various versions of the condition. I believe the version I have is known as Esobar syndrome. I say “believe” because I have never been tested for it, but the symptoms are very similar to mine and that’s the conclusion my PT at Alfred I. DuPont Institute in Delaware has reached.

Being a professional graphic/web designer I have created a site for others with AMC to help spread the word about the condition.

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Thinkstock photo by Welcomia.

 

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