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Living with CMT - Erin's Story

“You have CMT.” - Who knew 3 words could change your existence forever?

Hello world, my name is Erin Black and I am a 20 year old college student learning to live life to fullest while navigating Charcot Marie Tooth disease. This month is one of great importance for so many living with CMT. Yet beyond that, this month is so important for those who don’t live with CMT to better understand what life may look like for someone like me (or the amazing other women you have heard from this month).

“What’s it like living with CMT?” Phew, what a question! While I understand everyone's answer may be different. Mine can be summed up in 3 words. Beauty. In. Chaos.

Diagnosis to New Changes

When I was only 7 years old, the official diagnosis came in. Now, it wasn’t all that surprising considering my dad had knowingly lived with CMT his entire life and the chances that one of his children would have the genes were high. However, little did I know as that tiny little blonde girl in the doctor's office of the Cleveland Clinic on June 27th, 2008… God had chosen me to bring purpose and light to the world through my diagnosis with CMT. Let me say that again. God chose ME!?

I felt unqualified and quite frankly exhausted for the first half of my CMT journey. As a middle schooler going through life with CMT… I was in pain, I was embarrassed, frustrated, and wondering why I had to go through this journey feeling misunderstood by so many. It wasn’t until God gifted me with the most beautiful and uplifting community that everything changed.

Did the pain, countless doctors appointments, days of fatigue, or nerve spasms ever completely go away? That is the odd part - they didn’t. Not at all. But I had to make a choice. Was CMT going to take over my life and the vibrant personality that lied below my diagnosis? Or was it time that I found beauty in chaos and used this story to spread love and purpose to others around me?


I chose joy day after day, I found the most encouraging and supportive community of powerful individuals living with CMT, I began using my voice to spread the story of beauty in chaos at every opportunity I could. And the most beautiful part is that you can too. Whatever that mountain in your life may be… it may feel chaotic and impossible but God has plans for you.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

James 1:2-4

Your story is not finished and your God is abundantly greater than your struggles. Keep praying. Keep hoping. Keep finding beauty in chaos. If you have a pulse you have a purpose.

With love,

Erin Black

“I praise you because I am fearfully and wonderfully made.”

Psalm 139:14

Erin Black is a 20 year old Junior in college studying Disability Studies and Public Relations at the University of Toledo. She is originally from Cleveland, Ohio but has found joy networking with other individuals with disabilities from all over the world. She is heavily involved in campus life at the University of Toledo - including advocating for student leadership, students with disabilities, as well as a member of Greek Life. She was thrilled to start a blog of her own a a few months ago after feeling called to share her life story with others as a young woman living with CMT.

You can check out Erin’s blog at

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