My Introduction - Edwin

[Guest guest]

Hi,

My name is Edwin. I'm a native New Yorker who was diagnosed with CMT when I was

5. Now 35, I'm happy to say I've lived a very productive life despite all the

difficulties I encounter daily due to CMT. I'm not sure what type I have, but

I'm currently working on finding out. In all honesty, I've spent most of my

adult life without medical attention for CMT. Not having the greatest experience

with doctors as a child, I decided to take it upon myself to maintain my

strength and mobility.

Back then, doctors were quick to suggest surgery and my parents, not having all

the information we have now, thought it was the best option. I had 10 procedures

in 8 years beginning at 6 years of age. The last surgery, a triple arthrodesis

allowed me to plant my feet solidly on the ground and I've been walking with

AFOs ever since. I'm sure all those years of anesthesia and restrictive casting

led to quicker muscle wasting, but we did what we felt was right at the time.

Four years ago, I broke my ankle, not a good thing on a partially fused ankle

(or ever, for that matter). The recovery time was extensive and set me back

considerably. This event prompted me to seek treatment once again and have found

the experience to be much more positive as an adult. A couple of years ago I

visited Mitch Warner in Las Vegas and was fitted for the Helios brace. This was

a life changing experience. These braces had me walking like never before.

Expensive, but worth every penny.

All in all, life has been good. I've worked my entire adult life, been married

to an incredible woman for the last ten years, I'm even back in school pursuing

a career in Rehabilitation Psychology. CMT has made things tougher, but til this

day I haven't found anything to be insurmountable because of it.

I'm thrilled to have found this group of peers to share experiences and exchange

ideas with. I've already found tons of useful information and will do my best

to contribute in any way.

All the Best,

Edwin