Introduction And a AFO question

July 11, 2006

Dear Friends,

I am new in this group and recently diagnosed with CMT4, an axonal

autosomal recessive hereditary motor sensory neuropathy. The first

symptoms appeared 6-7 yeas ago when I was 18 years old. I did not

pay attention much until recently that the disease progressed and

caused me lot of problems. I have developed sever foot drop such

that approximately all lower leg muscles have been atrophized and

nothing has remained.

As I thoroughly searched in the web and also my physicians

mentioned, it seems that there is definitely no particular cure for

CMT at present; neither probably would be in our life-time

especially for this rare type.

The incident has caused me lot of stress in the past couple of years.

Progressive, incurable, inborn and genetic-based, social outcast, increasing

disability in walking, marriage difficulties, … all of these features made me

to loss all my hopes for the future life. I do not know I am paying the price of

what and why god treated me this wrong way.

But now I do not want to put these issues, as they may adversely

affect group members. I want to ask you about Ankle Foot Orthosis,

if any of you has tried it yet. I have a heavy gait and I am

embarrassing when stumbling and staggering in front of people in

university, family, street.

To tellyou the truth, I loathe to be considered as a disabled or crippled

youngster. I would like to know two issues about AFOs and I would be very happy

if someone can tell me something about them.

First is it possible to obviate my gait completely by a proper AFOs? If no, to

what extend it can help in my case? And second, If I use a good custom-made one,

is it clear that I am wearing a brace either by observing the way that I am

walking or the noise that it may produce?

I mention that I have developed a fairly severe muscle atrophy,

however I am quite strong and live independently. It seems that my

tenacity in walking has made the remaining muscles quite strong,

although there exists a clear and rather heavy gait and bones and

joints are bearing a large pressure. But since proximal muscles are

healthy and strong, I feel I can take advantage of AFOs and thus

decided to ask you about that.

Best wishes and kind regards

Selfish Genome

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