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Don’t let this diagnosis limit you

Home / Living with FSHD / Don’t let this diagnosis limit you

Posted on: Sep 03, 2018

When one path ended, a new one opened up

by Nelson Dronet, Sulphur, Louisiana

I would like to take a moment to share my story in the hope that it reaches at least one person and helps him or her understand that a diagnosis of FSHD or any other neuromuscular disease can be transcended.

Growing up, I knew something was slightly off, but my symptoms were not enough to concern doctors. They always told my parents that I grew too fast, and my muscles had to catch up to my 6’2″ frame. I graduated from high school and went to work in the chemical refineries, which led to a job in a local shipyard as a ship fitter and welder.

In my early 20s I began to notice that my dominant arm was getting weak. In 1998, after a trip to the neurologist and follow-up visit to a muscular dystrophy specialist, I was diagnosed with FSHD at 24 years old. In 2000, I had to quit working in my chosen field due to the progression of muscle weakness.

I began the fight for disability compensation, which I was finally awarded in 2001. After some soul searching, I realized that this was not the way I wanted to live. I wanted to stay as active as possible, hopefully to combat some of the progression, and my mind still worked perfectly.

I started researching what kind of jobs I could do with my physical limitations. I contacted Vocational Rehab and began the process to start college. College at age 33 was a scary thought, but I knew I wanted more than what I had. I set out on a path to earn my bachelor’s degree in psychology, followed by a master’s in psychology, with aspirations of being a counselor for individuals with disabilities.

In the final year of my undergraduate degree, I was introduced to applied behavior analysis, and I knew what I was going to do with the rest of my life. I completed graduate school and went on to begin my career as a behavior analyst, where I work with children with autism and other developmental disabilities.

I chose to share my story because I want people to understand that these disabilities do not have to limit what you do in life―only the way you must go about doing things.

For more stories, visit our News Center.

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Filed Under: Living with FSHD, Mental Health

Comments

  1. Tanya says

    September 16, 2018 at 2:17 pm

    A very inspiring story. Continue like this. God be with you!

    Reply

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