5 Questions About Charcot-Marie-Tooth with Virginia Mamone

TeamUP co-captain Virginia Mamone lives with a progressive neuromuscular condition known as Charcot-Marie-Tooth (CMT). But with the help of her Allard AFO braces, she won’t let anything stand in her way. Get to know Virginia with these 5 Questions!

1. Can you explain what CMT is and how it affects your life?

CMT is a disease of the peripheral nerves that control your muscles. It is a progressive condition causing loss of normal function and sensation in the lower legs, feet, hands and arms. It affects 1/2500 people regardless of age, gender or ethnicity.

In my case, I have foot drop from CMT-related nerve damage. I also have a loss of sensation in my extremities and balance/coordination issues.

2. What is the one thing you’d like the general public to know or understand about CMT?

It doesn’t affect our minds. It might affect our thinking and focus, because we are busy paying attention to the location of our hands and feet because many of us have issues with time, depth and space perception.

3. Are you involved with any CMT-related groups? How so?

I run the Spanish CMTA support group on Facebook as well as admin the CMTAthlete Facebook group. I also volunteer with the local MDA Nevada office, speaking on behalf of children and their families with Muscular Dystrophy.

4. How does your Allard AFO help with CMT? What kinds of activities does it allow you to do?

My braces help me walk properly and they also help with balance. I can walk longer distance without getting fatigued. I am able to do most anything as anyone else. I might be a little slower but there isn’t a thing that I can say “I can’t do that because I have braces.” I believe that if there’s a will there is a way.

5. What would you say to other people living with CMT or other mobility challenges?

Don’t give up! It might take you a little longer to do things and it might be frustrating but the the journey makes the destination even sweeter. And don’t feel sorry for your situation—make it a base for what you will rebuild. Always be an advocate for yourself and your family.