Living with CMT - Lv's Story

“Cô gái có đôi bàn chân yếu”, I’ve learned that this nickname doesn’t define me, but it adds to my story. And that story has made me strong... 

Hello there! I am Lv Vo, a 19 year old university student in Salt Lake City, Utah. Being born into a family of Vietnamese immigrants, disability was not something we discussed openly. My CMT was more prominent and easier for my family to notice. I grew up very aware that my body was different. My grandparents would introduce me as cô gái có đôi bàn chân yếu, which means “the girl with the weak feet” in Vietnamese. 

Picture this: a kindergarten playground, a concerned teacher, kids whispering, my grandfather bolting to the school in a panic with a hot pink baby stroller, and me on the ground holding my legs. My grandparents got a phone call from my elementary school explaining I had fallen. The language barrier between my ông nội and my teacher caused him to panic and speed to the school. I remember him scooping me up and rolling me out in the stroller. This was my earliest memory of my CMT, and my first memory of being a little different from everyone else.

That moment is saved in a special drawer in the back of my brain. It was a pivotal moment during my childhood. I used to find the story embarrassing, and I would never have told a soul about it again. Being wheeled out in a baby stroller was the most humiliating thing that could've happened to a kindergarten kid. This is a prime example of when I felt less than my peers growing up. Now, after a lot of healing, it's a memory I am fond of, and it makes me giggle at my younger self.

Throughout that year, I had continuous falls and my feet were showing visible signs of foot drop. I was diagnosed with CMT 2A the following year. For most of my life, I saw my diagnosis as an annoying chip on my shoulder I desperately wanted to flick off. Thankfully, my older cousin Kathy was there with me every step of the way. She became the person who encouraged me to stand up for myself and has guided me through life with CMT.

Growing up, I experienced moments of bullying because of my CMT, which made me more hesitant to talk about my struggles. During my senior year, my cousin introduced me to community support groups. I remember not uttering a single word until Kathy encouraged me to do so. I opened up about my struggles with CMT beyond its physical restraints. The support I had received from strangers with the same disease over a Zoom call left an impression on me. After graduating, I got the chance to go to Camp Footprint. I was surrounded by people who understood my struggles without having to over explain. This was my first time talking to other kids my age with CMT. It was pure magic. 

Lv with her cousin Kathy at Camp Footprint

This year, I had the opportunity to be a counselor for the lower girls’ cabin, and it quickly became one of the most fruitful experiences of my life. I remember a few campers wanting to try on false lashes, so I brought a pack with me. Soon enough, there was a line of three girls at my bunk. It was heartwarming to guide them through something as simple as makeup. Putting on lashes and makeup is second nature to me, but the girls were struggling to put them on due to our funky CMT hands. These were tasks I had taken for granted, but I realized that those little moments were the most meaningful parts of their week at camp. 

Some advice I would give is to be the person you needed growing up. Speak up about your experiences. You never know who will tune in and listen. You might be the reason someone doesn’t feel alone with CMT. “Cô gái có đôi bàn chân yếu”, I’ve learned that this nickname doesn’t define me, but it adds to my story. And that story has made me strong. 

A song to listen to: “Letter To My 13 Year Old Self” 

- Laufey

“CMT is not my weakness, it is my superpower.”

- Lv Vo

Lv Vo is a 19 year old living in Salt Lake City, Utah. She’s an undergraduate student at the University of Utah studying Disability Studies. She has CMT type 2A. She shares her life as a young adult navigating life in college with a disability. She is dedicated to helping others her age to find their voice. In her free time she loves going on spontaneous side quests with her friends and getting lost in the beauty of life.