My Name is Luca
this is my tiny story.
27 May 1969: it’s my birthday.
I was born suffering from Poland Syndrome, but at the time nobody knew about it.
22 February 2012: it’s the date of my rebirth. Everything in the middle is irrelevant now.
What’s past is past.
The moment in which I found out the name of my disease, whether by chance or otherwise, is imprinted on my mind.
Poland Syndrome.
I remember it very well, and I want to shortly tell you about it.
As I was looking for some information about a muscular pain to my left shoulder that had been lasting for some time, I chanced upon the picture of a kid with a raised arm.
Among the many pictures on that page, my attention was immediately attracted, as if by a powerful magnet, by that very picture.
Only by that one.
That picture, where the face was not visible, looked familiar to me right away.
It reminded me of someone…myself!
Before I could even think about it, my finger had already clicked on the link.
I remember the feeling of surprise and wonder.
I remember the emotion…as if it were happening now…
It was quite direct and violent.
I started reading.
After a few moments, I already had some answers to a lifetime questions.
Unbelievable…I was not alone, and I was not the only one!
The burden I had been carrying for the last 42 years had a name: Poland Syndrome.
The website, full of detailed and precious information, went under the name of Associazione Italiana Sindrome di Poland.
I recall spending the following two days looking for information after information…I only had one concern…eagerly learning as much as possible.
That’s why I looked up many websites of different nationalities.
After having partially satisfied my curiosity…I came back to the start.
The website of Aisp: Associazione Italiana Sindrome di Poland.
The following step was signing up on the website and, at the same time, submitting my first request for help through the “Mi presento” in the Forum …
The wait didn’t last long.
A volunteer, in charge with new arrival reception, replied almost immediately and helped me through the first steps of my route.
Her name is Monica Vigo.
Hi Monica!
you are a wonderful woman…Thank you!
She was the very first contact I had with the Poland tribe and I immediately felt a spontaneous connection with her.
I want to say it…because I feel it as deeply true!
Through some phone calls and emails, the association scheduled in a very short time the specialist medical examinations needed to ascertain if I had been suffering from Poland Syndrome.
I had no doubt, but I am not a physician.
I only asked to have the examinations made in Genoa, a city I didn’t know if it weren’t for the lyrics of my beloved musical poet and a city I would fall in love with immediately.
The association, made up of volunteers – I want to underline this point – organized all the medical examinations, grouping them in 2 days: 18 and 19 April 2012.
By the way, I had never experienced a medical environment nor a hospital, above all.
So, I had never set foot in a hospital for health reasons before, it was my first time ever.
The very first contact with healthcare I had was at San Martino Hospital (such a small city, I’d say!), where I met Prof. Carlo Martinoli for a chest ultrasound.
He first diagnosed that I was really affected by Poland.
Well, I was right!
Thanks to Aisp I was on the right track and in the right place…and above all, I was helped by the appropriate healthcare professionals!
The next examination was scheduled at IST (National Institute for Cancer Research), inside San Martino Hospital, with Dr. Maria Victoria Romanini.
She diagnosed Poland as well, and explained to me in a clear, precise and extremely professional way, the different options I had to improve my situation.
She suggested without pushing me and she helped me to make the choice most suitable to me.
She gave me all the information I needed and left the decision to me.
As it has to be.
Thank you Dr. Romanini, I am grateful to you!
The day after, 19 April, I had an appointment for the genetic examination at Gaslini Paediatric Hospital.
I had heard about the Gaslini Hospital, a well-known paediatric hospital.
The geneticist took some blood samples and detailed the possible causes for Poland.
She asked me some information about my family and asked if I could have been interested in taking part in the study on Poland.
For sure!
It was the least I could do.
Afterwards, she addressed me to the next office, where I could get my certificate of rare disease. I had to bring it to my Local Health Authority (Asl) office in order to start my healthcare journey.
It was the rare disease office (Sportello Malattie Rare) of the Liguria Region.
There I met other doctors and nurses.
I want to mention their names because each and every one of them is endowed with deep and natural Humanity and Splendid Professionalism.
I would like to address a warm greeting to The Boss, Dr. Bazzari, office manager, who easily handled a small information issue with my Asl office with a phone call, and to Dr. Tramaglino, social worker, capable of solving problems with determination and decision; and to nurse Angela Andrei … a big kiss, for having explained in detail but simply, the steps I had to take, to untangle the various offices … and for her natural Sympathy!
As I waited for my turn in different Gaslini Hospital waiting rooms, I could not stop looking around me and I saw people, families, children, patients, healthcare workers…all different, yet all the same…with the only aim to help and also to get help and counselling.
That day spent at Gaslini Hospital will always remain in my heart.
I will never forget you!
You offer smiles, hopes and solutions.
Thank you for everything you do!
All these positive emotions could not have been possible without the commitment of Aisp volunteers. This constant, sincere and generous commitment allowed me to define my journey in such a short time, and with highly-qualified health professionals.
Aisp was born in 2013 from the intelligence, commitment and suffering of a woman, a mother, Eva Pesaro.
Thanks to her, the Associazione Italiana Sindrome di Poland directs, counsels and solves problems related to Poland Syndrome.
I came back home with a date for surgery, which I decided to undergo.
September 2012, then postponed to 15 October.
