Entries by mood

Giovi’s story

Hi, my name is Giovi. I am 15 and I live in Turin. 

When I was born, my parents and 3-year-old brother thought I was a cute little baby – blonde, healthy and lively, with big green eyes eager to know everything about the world…

6 May 2022 by

A family’s tale

Hello everyone. My name is Annamaria and I live in Rignano sull’Arno (near Florence).

It all began back in May 1996.
My son Riccardo (23 months old at the time) fell, but as he stood up again he started limping…

6 May 2022 by

Linda’s story

Hello, I’m Linda Craab!

I’ve lived with Charcot-Marie-Tooth disease for 70 years and I’ve got a lot to say.

6 May 2022 by

The story of Marie-Hélène (from France)

My name is Marie -Hélène, I ‘m 27 and I live near Strasbourg.

Around the age of two, my parents found a problem with my feet.When my mom put me shoes on, I was not able to raise them and run like other kids of my age did…

6 May 2022 by

The story of Nicolas (from France)

My name is Nicolas , I am 21 and I have learned I have CMT2A since I was 16.

I was born three weeks in advance. I was a baby without problems , qualified a bit lazy until the time of walking. I did it in a weird way, with big problems of balance, falling a lot…

6 May 2022 by

The story of Yohan (from France)

My name is Yohan, I was born in March 2000 and I suffer from CMT2A (HMSN2A caused by MFN2 gene mutation) diagnosed in April 2008.

I started walking when I was 9 months, but at the age of 18 months I didn’t want to walk anymore…

6 May 2022 by

Nigel’s story (UK)

Hi, I am Nigel, 68, and I would like to tell you my story of CMT2A (so far).

From about 10yrs old I was suppose clumsey but doctors thought this was a side effect of some tablets I was taking for a different problem…

6 May 2022 by

The story of Betty and her child from China

This is the story of Betty, a chinese mother able to turn her suffering for her and her child disease into something precious for a lot of people. It has been translated by an article published on the Shenzhen Evening News…

6 May 2022 by