My name is Jair
I’m 35 years old. I am a Poland Syndrome carrier and a founding member of Aisp.
At the end of 2002 I was still living in Brazil and I used to go on the Internet to search for scientific publications and/or someone who could help me to better understand the Syndrome.
Unfortunately, searches came to nothing and I always ended up on an extremely technical American Poland Syndrome website.
That was a tough time. I felt alone, different in everyday life.
However, one day fate surprised me.
After searching “Poland” on the Internet, a different result from the usual ones appeared and I immediately opened it.
So I had the great luck and happiness to meet Eva Pesaro, Massimo Masi and many others thanks to an online hotmail group called Poland Syndrome, created by Eva.
It was one of the best days of my life:
I was happy because I wasn’t alone anymore and because I finally found other people who were living the same experience as me.
I had found them, but they were so far away, on the other side of the world, in Italy.
What could I do?
It’s been a long time since I wanted to live an experience abroad, but I was uncertain about the destination to choose.
Well, Poland helped me choose a country, change continent and learn a new language and culture.
So, I decided to move to Italy to meet the people suffering from Poland like me.
Meanwhile, the hotmail group was growing so much that at some point we realized that maybe we were not so few, alone and rare as we were thinking.
Then, Eva suggested meeting in Genoa to get to know each other.
That was a wonderful experience for me. I was very nervous and the night before the meeting I could not sleep well.
I remember it was really exciting. My heart was beating fast all day.
I will never forget the moment when Francesca came to me smiling and said:
“Hello! I am Francesca Barzasi and I have Poland Syndrome like you”.
She was the first person with Poland I met.
Finally, my wish to meet another carrier came true.
Today, thanks to Aisp we can say we are no longer alone. Please, support Aisp because without this association we are just carriers of a rare disease with a strange name.
