My life with Friedreich’s Ataxia

The story of Natache

My name is Natache Iamaya.

I’m from Rio de Janeiro.

I have Friedreich’s ataxia, a rare genetic disorder that damages the nervous system and impairs movement and muscle coordination.

The disease has already taken over my voice.  I can’t talk anymore but I can still say what I think.

The medical literature indicated that between age 30 and 35 I would be living my last year.

Today, at 39, I consider myself a survivor, a warrior or proof that medicine isn’t such an exact science. 🙂

Typing has become more dificult at all times and speaking clearly requires a huge and exhausting effort.

When I got my diagnosis I initially fell apart, went to the bottom of the well and feared everything. 

This negative feeling has reemerged in me several times. An example would be when I used a wheelchair for the first time.

We need to understand that there is a way out of every desperate moment and not give up.

It’s very hard to have ataxia but let’s live and learn from it the best way we can.

We only know the strength we have when our only alternative is to be strong.


My life with Friedreich's Ataxia