Krystal’s Story | Living with MD : In Her Own Words

I had the pleasure of meeting Krystal last year through a mutual friend. We first met to discuss working together. Krystal is a stylist and although we could not work out a shoot before my wedding, we still plan on doing one in the future. Krystal is an amazing woman with an incredible story…

Here is her story in her own words:

At the age of 16 I was diagnosed with Juvenile Epilepsy. During this time of testing and diagnosis the doctors also discovered I had a form of muscular dystrophy called Charcot-Marie Tooth disease as well as a motor neuropathy, both of which affect my nerves and muscles in my lower extremities. Pretty much, I was told that my muscles and bones will eventually become so weak that I will be paralyzed. At the time, these “issues” didn’t really bother me. So, I basically ignored the diagnosis. There was no known treatment at the time so why dwell on it. It was a tough pill to swallow for a 16 year old getting ready to graduate high school and move to Washington, DC, but I did. I put it to the back of my mind and continued on with life.

Unfortunately, as I began my sophomore year of college the diagnosis I had all but forgotten about, flooded my thoughts as I was struggling to walk upstairs to get to class. It was then that I realized ignoring the issue would not work much longer, but me being who I am, I continued to ignore it. I never talked about it; neither the diagnosis nor the fact that I was physically struggling. I was embarrassed and I did not want to be treated like a handicap.

Fast forward to 2013. I can’t walk upstairs unassisted. I can’t run and standing up from a chair is sometimes painful and is almost impossible without the use of my upper body. I experienced every emotion possible. I was sad, mad, depressed, and angry. You name it, I went through it. It got to the point where I let it affect my relationships. I even decided to no longer continue with a career that I loved because I let the “what ifs” get the best of me. I hated feeling like this; it was so uncharacteristic of me.

So, after lots and lots and lots of prayer and many self motivational talks I was able to shake this pity party I’d been having and take action. And that’s exactly what I did. I found a new neurologist who gave me hope. I got back in the industry that I can’t get enough of and more importantly I began to open up to my closest friends and family about the things I had been going through. The burden of keeping everything to myself was finally lifted and I was able to get back to me!

I’ve been asked several times what would I say to someone experiencing the same thing or something similar and I finally have an answer. Don’t give up hope! Regardless of what the doctors or anyone else says, don’t give up hope and definitely don’t stop pursuing your dreams. If I have nothing else, I have my faith and I know this diagnosis is not the end all, be all. I can overcome it…I’m overcoming it!

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Want to learn more about Charcot-Marie Tooth Disease or get involved?

Visit: www.cmtausa.org

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