My Experience of Growing Up With CMT

by Derek Poling
(Holiday, FL USA)

Personal Experience Essay for College Scholarship - My Experience of Growing Up With CMT. My name is Derek. I am a first year student at St. Petersburg College in Florida. Currently I am seeking an Associate Degree in Information Technology Security. I will then transfer to the Bachelor Degree program for Technology Management with a concentration in Security Assurance. I hope to be able to continue on with a Masters Degree for further Computer Security training. I chose this field of study because of the rise in computer crimes, viruses, identity theft and the necessity for protecting sensitive information of businesses. Also, I needed to choose a career that could accommodate my diagnosis of Charcot-Marie-Tooth Disease and any physical disabilities that may be encountered in the future.

Charcot-Marie-Tooth Disease (CMT) is the most common type of hereditary neuropathy. Hereditary neuropathy is a debilitating genetic disease that takes away one’s basic physical abilities, making life more difficult. CMT is an inherited peripheral neuropathy, also known as peroneal muscular atrophy and hereditary motor sensory neuropathy. This disease causes nerve damage and wasting away of muscles in the legs, feet, arms and hands. As result, muscle weakness, loss of balance and coordination, high arches and claw toes, drop-foot, foot bone abnormalities, poor hand functioning, scoliosis, numbness, tingling and pain in the extremities can occur. CMT is a slow progressive disease and severity varies, even within family members. There is no cure or effective treatment. Moderate physical activity, physical therapy, occupational therapy and sometimes surgery can be beneficial.

I was four years old when I started showing signs of CMT. I was walking and running on my
toes due to having high arches. I tripped and fell frequently. My parents took me to see a neurologist for an examination. The neurologist told my parents that since my dad had CMT and it was in my grandmother’s family, chances were I had it too. I was referred to Shriners Hospital for Children. I was fitted for leg braces to wear during the day in hopes of stretching my Achilles tendons to flatten out my feet. My parents were told that I may need surgery in the future. A few years later I was fitted for night braces. I couldn’t sleep with them on, nor could I walk with them. I tried to do normal childhood activities such as: little league soccer, little league baseball, skateboarding, rollerblading, basketball, football, etc. I had a very difficult time doing these activities because my ankles were not flexible; I was slow, uncoordinated and not able to compete with my friends. My feet started inverting outward during my early teen years, making it more difficult to walk properly. I was now experiencing pain in my legs and feet. I ended up having posterior tibia tendon transfers and plantar fascia release done on both legs at Shriners Hospital. My feet are aligned more correctly, but I still have high arches and claw toes. The only time this causes me problems (pain in legs/feet) is when I stand in one spot, too much walking, on my feet for too long or participating in high impact activities. If I overdo any physical activity, I am sore and exhausted for the next few days. I know that when I start experiencing more pain than normal, I must take a break or stop the activity.

I feel that CMT has put limitations on what type of work I can do. I know that if the activity causes pain, nerves and muscles are being harmed. At the present time, the disease isn’t affecting my daily activities of living. The major impact from the disease is having the high arches. If I had normal feet, I probably would be wearing a man’s size eight. As it is, my shoe size is a kid’s size six. In order to find adult looking shoes I must order my shoes on line. This can be such an inconvenience as well as problematic.

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Comment from your friendly team at College Financial Aid Advice

Thank you Derek for sharing your personal experience college essay about growing up with CMT. Good luck to you in college.

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