Patient Voices: Obscure, and Often Devastating

 

“It’s like the hidden secret,” said Allison Moore, chief executive of the Hereditary Neuropathy Foundation, who has the disease. “And when you mention, ‘I have C.M.T.,’ people look at you like you have three heads.”

The disease — named for Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth, the researchers who first described it in 1886 — is actually a group of neurodegenerative conditions that gradually degrade the nerves in the feet, legs, arms and hands, usually starting in childhood. There is no medical treatment, though orthopedic braces and corrective surgery can help.

On nytimes.com/health, six patients describe life with C.M.T. Here are three.?

Bernadette Scarduzio, 31

Drexel Hill, Pa.

To have a disease that’s not well known is scary, and you feel like you’re not a part of the world.

I’ve told people that I have multiple sclerosis before, because I know it’s like M.S., and I felt stupid saying I have this disease that no knows of. I felt weird.

I want to be the face for this disease, and I want everyone to know that’s what I have. The people that are hiding, I need them to come out and say, ‘Yes, I have this disease.’ I know the name is silly, and it’s a family disease, and it sucks, but that’s the only way were going to get a cure for C.M.T.

Joseph Torello, 29

Queens

As an actor with C.M.T., the most nerve-racking part of the audition is walking to the center of the room. It’s not the singing; it’s not the dance callback; it’s not the reading; it’s that walk.

Everything is based on looks, and that’s why it’s so nerve-racking and so easy to get into your head when you have something like this. It’s hard enough to get a job, but to have one more hurdle in your way of that job is tough.

Nicholas Zappola, 18

Sag Harbor, N.Y.

At first I was nervous and scared because you’re diagnosed with a disease that you have no idea about, but I knew I wasn’t alone, and I knew that I could talk to my family members that have it.

I walk with a limp. I am in pain constantly, but I don’t let it get to me. You do suffer, but if you strengthen yourself, you can overcome just about anything.

I feel like a stronger-hearted person than most of my friends because I have the capability of going through all this ?— ?keeping a strong mind and helping other people out ?— and it makes me feel good.