Walking, running, jumping, balancing, holding… such simple tasks right? I mean how hard it can be to do any of these? They’re all naturally programmed in our bodies, what if though these simple tasks became harder / almost impossible to do? What if with every step you took you lost your balance? What if you twisted your ankle on the tiniest stone? What if with every step you took it hurt? What if the simple process of trying on shoes became a pain staking process (and no I’m not talking about finding one that matches your outfit), I mean a way that you have to find a shoe that is comfortable, flat, one that doesn’t hurt? What if the simple task of holding objects became a more focused driven one, knowing that at any point it may just slips out your hand? What if over time all these simple things got progressively worse? What if all of this was a life long struggle???
Charcot-Marie-Tooth disease (CMT), CMT is the most commonly inherited peripheral neuropathy (disorder of nerves) yet is one of the most unheard of as well. It is estimated that 1 in every 2500 people is affected. Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people.. So many people and yet how many of you have actually heard of it or know what it’s about?
CMT is currently an incurable disorder, although researchers are currently looking for one, no-one can say when one will be found. CMT affects each person differently and researchers are always discovering new things related to CMT as they go long. CMT works differently to other muscles dystrophy’s in that as the CMTAUSA website puts it ‘CMT patients slowly lose normal use of their extremities as nerves degenerate and muscles weaken because the affected nerves no longer stimulate the muscles.Many patients also have some loss of sensory nerve functions. CMT doesn’t have a cure, although physical therapy, occupational therapy, and moderate physical activity are beneficial. Sometimes CMT is surgically treated.’ CMT is not a predictable disorder either, yes there are a lot of symptoms that you will find common, but the fact is that it affects each person differently, and being a degenerative disorder it affects each person at a different rate. I personally believe that all my regular exercise will stop the progression, but time will tell. For some such physical exercise is not possible, so I do consider myself lucky that I can do it.
So what causes CMT? Well basically there are 2 types ofneurons in the nervous system that is used to send and receive messages in thebody. Motor neurons are messages that are sent from the brain through the spineto all the motor muscles (essentially when your brain tells your body to move).Sensory neurons is the other type, all your senses (Touch, sight, smell, etc) is the message that is sent from these parts of the body through the spine to the brain. ‘The peripheral nervous system is also comprised of motor and sensory nerve fibers, and since CMT affects the peripheral nerves, it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms(numbness). The peripheral nerves are often described as being like electrical wires with an inner core (the axon), which is wrapped in insulation (a sheath called myelin). When the myelin is damaged (Type 1 CMT), the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (Type 2), the speed of nerve conduction is almost normal, but the strength of the signal is reduced.’ Since CMT is a multi-gene disorder, there are many different defective genes which cause the disorder. As of early 2010, mutations in 39 genes have been identified as causes of CMT. CMT is categorised as: Type 1, 2, 3, 4 and X, each type is then further broken down depending how it affects your nerves, genes and body.
I guess for years I have put CMT at the back of my mind not worrying about and just carrying on with life. The fact is – it’s a part of my life and it will always be. I have never let it stop me from doing the things I want to do nor will I ever let it, you can read about that in some of my other posts for more on that. The whole reason for me doing this is to raise awareness, doing my part to try and make everyone aware. So I ask you to retweet this,share it on facebook, pass it along in emails, blog it, digg it, whatever you can do to help spread the word. It is time to make everyone aware!
For more info you can check the following links:
Others trying to make a difference and support groups:
And they say a picture is worth a thousand words, so here is my feet just so you know I’m not messing with you. So next time you read one of my posts, keep this in mind 😉