Living with CMT - Elianna's Story

When I went to a camp for kids with CMT, I was a little nervous because I wasn’t sure what that week was going to be like. But, the nervousness went away as soon as I met some amazing people.

Hello, my name is Elianna! I’m a college student as well as a swim instructor. I’m currently studying American Sign Language and childhood development at a community college. I’m from Southern California and hope to move someday in the next two years. I was diagnosed with CMT in 2021, a little after my birthday. I was originally diagnosed with type 2, until two years later, when I was diagnosed with type 1. 

I started experiencing nerve pain in 2019 at just thirteen years old. The pain first started in my feet and later struggled with really bad fatigue.  Here are the symptoms that I deal with daily: Nerve pain, fatigue, muscle weakness, and problems with balance. I currently use a cane when I know I’ll be doing a lot of walking, like on my college campus.

Because of pain, I started getting mad at myself and even at God. There was a time where I didn’t see a point of continuing to have faith.

Later on, when I was seventeen, I was at summer camp with my church. We were at chapel, when all of sudden, all the pain that I was struggling with that day disappeared for a few seconds.That's when I knew that I wanted to be a faithful and humble follower of God. I can say for a fact that when I die, I will go to a beautiful place, where I will no longer be in pain. I will be able to dance for the Lord without pain and falling over. 

The way I describe CMT to others is that it's a hereditary motor and sensory neuromuscular disease. It affects the peripheral nerves that send signals to the brain. that work the motor control for hands and feet. It can be hard watching my siblings also struggle with CMT. But, I know I can talk to them about what I’m going through and know they can relate. 

I've watched my siblings experience pain from CMT since I was little. When I was older, I was so excited to meet others outside my family that have CMT. When I went to a camp for kids with CMT, I was a little nervous because I wasn’t sure what that week was going to be like. But, the nervousness went away as soon as I met some amazing people. My favorite part about camp footprint would be, talking with the girls in the cabin and sharing our experiences. 

There are a lot of people that inspire me, but the one person that I look up to would be my older sister, Katerina. She is such a strong woman, who has been speaking about CMT for a while now. I look up to her because even with all the pain, her faith in God is stronger.

For those that have siblings with CMT, I would say be patient and know that it's okay to cry. It’s hard watching siblings live with CMT, but try to do small things that are fun. For example, I love going to get ice cream with my sister. 

You shouldn’t compare other’s experiences with your own. Everyone’s journey with CMT is different. Know that you are not alone. Be the light that shines the pathway so you won’t fall. 

“You can't go back and change the beginning , but you can start where you are and change the ending.”

C.S. Lewis

Elianna Grace is a nineteen year old college student from California. She is also the youngest of four who have Charcot-Marie-Tooth disease. Her goal is to work with kids that are non-verbal, teaching them ASL. In her free time, Elianna enjoys painting and going on walks. Her favorite Bible verse is Philippians 2:3-4.