Living with CMT - Lauren's Story

CMT is a part of my life, but it isn’t my whole life.

Hi everyone! My name is Lauren Blanchette, I’m 23 years old, and I’m from Rhode Island. I graduated from the University of Rhode Island last year with a Bachelor’s degree in Business Management and Sports. I’ve always loved sports and being around people, and I’m currently looking for a career in Sports Management. My dream job would be to work as a Team and Family Services Manager for a professional sports team. And if you’re wondering, my favorite team is the Boston Bruins!

I was diagnosed with Charcot-Marie-Tooth Type 1A (CMT1A) when I was 10 years old. At that age, I didn’t really understand what the diagnosis meant or how much it would eventually affect my life. Before that, when I was 8, I was diagnosed with another genetic condition called Noonan Syndrome, symptoms include low muscle tone and short stature. These two genetic conditions are rare and I was once told they are not supposed to come together in a body. When I was first diagnosed they thought I was only one in a select few who had these two types of diseases.

Growing up, and even now as an adult, I’ve had to think about things that a lot of people don’t necessarily have to think about. Is it going to rain? Is there an accessible entrance? Where is the accessible parking? Will I be able to get around the building? These are just some of the questions that can go through my head before doing something as simple as going somewhere new.

One of the biggest ways CMT has affected my life is that I eventually became wheelchair dependent. That has definitely been one of the hardest parts of my journey. Having to adjust to changes in my mobility and becoming more dependent on a wheelchair and on other people was not something I ever imagined for myself. There have been frustrating days, difficult moments, and definitely times when I’ve thought, “Why me?”

But as I’ve gotten older, I’ve learned that life doesn’t always go the way you planned and that’s okay. Your life can look different than you imagined and still be a really great life.

My family and friends have been a huge part of my journey. Having people around me who support me, encourage me, and are there for me on both the good days and the difficult ones means so much to me. My mom, especially, has always been my biggest supporter and role model. She has helped me through so many challenges and has played such a huge part in helping me become the person I am today.

The CMT community has also helped me feel less alone. Being able to meet and connect with people who understand what it’s like to live with CMT is something I really value. Sometimes, just knowing that someone else understands what you’re going through can make a huge difference. In 2023 I went to the CMTA Research Summit and finally got to meet others with CMT. It was amazing to meet others who I had virtually met online in person!

Since my diagnosis, I’ve definitely changed as a person. I’ve become more independent, more resilient, and more comfortable advocating for myself. I’ve learned that asking for help when I need it doesn’t make me weak. I’ve also learned that being a wheelchair user doesn’t mean I have to stop doing the things I love or stop pursuing my goals.

CMT is a part of my life, but it isn’t my whole life.

One quote that has always stuck with me is, “She believed she could so she did.”

If you’re reading this and you also live with CMT, I want you to know that you’re not alone. There will be hard days, and it’s okay to have them. It’s okay to be frustrated, to ask for help, and to take things one day at a time.

But don’t let CMT convince you that you can’t accomplish the things you want to accomplish. You can still have dreams, set goals, have a career, travel, make memories, and do the things that make you happy. If there’s one thing I’ve learned, it’s that you have to keep moving forward—even if moving forward looks different than you once thought it would.

Lauren Blanchette is from Rhode Island. She graduated last with a Bachelor's degree in business management and sports and is currently looking for a job. She also enjoys being part of Compass, an online community group for young adults living with CMT.

You can find out more about Compass and other rescources on the CMTA here: https://cmtausa.org/