About S.M.I.L.E

Author: Karthi Siva

Karthi first shared his story on Instagram. He agreed for us to share it to further spread awareness of the mental health struggles faced by people with disabilities. 

 

Introduction

I have taken some time to write about my journey in Charcot Marie Tooth Disease (CMT) to show some awareness and insight into genetic disorders. Unfortunately, our communities are afraid to talk about genetic conditions that are impacting the children's life. I was diagnosed with CMT at a very young age and it was difficult to figure out what kind of condition I had. Over the years of growing up with such a condition my life has been and still continues to be a struggle, though talking to many specialists and consultants in the field of neuropathy, we are slowly overcoming this challenge together. You may be wondering why I am being outspoken about it, and frankly I feel that it is time to show those others who suffer that you can still enjoy life to the fullest no matter what. 

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What is CMT? 

First of all, we need to understand what I have inherited to understand m y story. Charcot Marie Tooth Disease (CMT) is a group of inherited conditions that damage the peripheral nerves. It's also known as Hereditary Motor and Sensory Neuropathy (HMSN), or Peroneal Muscular Atrophy (PMA). The peripheral nerves are found outside the main central nervous system (brain and spinal cord) and controls the muscles and relay sensory information, such as the sense of touch from the limbs to the brain. 

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Struggles and Sufferings

The struggles and sufferings that I went through growing with this condition meant it came with a lot of pain, tears, fatigue, and worst of all, being insulted. For any young child going to school is nerve wracking, but going with a medical condition was going to make it 10 times harder, including for a parent too. A struggle I faced the most would be balance. When I was younger I used to fall most of the time due to weakness in my legs, resulting in me bruising various parts of my body, and spending a significant time in first aid being patched up by the aider explaining to them what happened, thus, it eventually beoming a regular occurrence. As time went on, I was bullied a lot for the way I used to walk, run, or even on how I participated in activities for physical exercise (P.E.). Even a simple exercise such as star jumps with CMT can impact the way in which anyone attempt to do the required task, with the outcome may look funny to others who watch from the side. Muscle pain is something that I have been suffering with for a very long time, and sometimes the pain can be unbearable when it hits your nervous system. With all this going on, it slowly resulted in a cloud of paranoia taking over, constantly battling the fears of other human beings never understanding, or trying to, what you are going through unless they were in your shows.

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