More unique than rare, Luca Alfano talks about his illness in a book

Out Tuesday, 25 February the book of the 37-year-old that more than twenty years ago discovered to be ill, even if the doctors still haven't discovered yet the syndrome

Luke was a nice guy, football fan, one of many who aspire to become someone trampling the pitches of the province, often dusty and filled with more potholes than grass. Then one day, exactly 23 years ago, he began to feel ill, to become tired, to become pale, to have a strange rash. From there began his ordeal that lasts still and he has decided to tell it in a book due out February 25: "More unique than rare" is the title of the book, published by 0110 Edizioni, because more unique than rare is his illness. He is Luca Alfano, class 1977, son of Lello and Maria, Neapolitans that came to the North to work in the 1970s.

"I was born weighing 4 kilos, I had a childhood that was more than normal. I started playing football in Azzate Calcio, I was also good. Football has always been my passion, I started 9 years, at 13 I was going to do an audition with Solbiatese when appeared the first symptoms of the "bastard", as I call my illness: due to a pulmonary haemorrhage I had to leave. I started doing exams after exams, I went to the hospital in Pavia at the beginning: my father joking always remembers that ‘the road to Pavia that we consumed’ by continuously going there and back", tells Luca. "Now I weigh little more than 40 kilos, but in 23 years no doctor has been able to give a name to my disease, a degenerative neuromuscular disorder that prevents me from doing a lot of things, forces me on wheelchair with a respirator attached. But I will give up."

The book to be released 25 February in all bookshops was helpful to Luke: "A type of self-psychology, he explains, "I started writing in a moment of anger, I wrote it mostly for myself. It has helped me a lot, especially to remove the shield that for many years I wore. How do I feel now? Well, at least morally, but every year that passes I feel more and more the effort in doing things and speaking mainly. But I do not give up, I always hope that some good news will arrive. I keep looking for this news because I know that it exists somewhere." When we ask who are the people that are close to him and help him, Luke has no doubts: "My reference points are my family and friends, without them I would be lost, because I must always be accompanied as I am not autonomous. Especially my brother Simone, he helps me a lot, every day I thank God for having a brother like him. Mine is a beautiful family, I dedicated my book to them because only they know what I went through in these 23 years. My mom is my personal physician, handling and assisting me in everything. In the Circolo hospital I found a good and competent physician, Dr. Diurni, who I would like to thank".

The book, on sale at € 13.50, is suitable for everyone, but could, according to Luca Alfano, help many others that find themselves in conditions similar to him: "I underline that I am neither a writer nor a great reader. Writing helped me get rid of a burden that I carried inside, I’m sure it will be useful to other people who for whatever reason are suffering, that carry something inside that they can’t throw out. And it is dedicated to all those people who take too lightly the word life, that don’t appreciating things that we have been given. And last but not least to all those people who complain for stupid things, not appreciating what they have." Luca is an IT engineer, the diploma earned with hard work from the night school after work. He has been an electrician, waiter, distributed leaflets and worked in the Purchasing Department of Confartigianato before the physical deterioration. Football is his main passion, Naples and Varese are his favourite teams (he also managed to meet Maradona that visiting Milan during an event for the Gazzetta dello Sport). The proceeds from the sale of books, as well as those of sweatshirts with the motto Carrrico" (Ed. Note: ’carico’ means full of energy, so ‘carrrico’ puts emphasis on even more energy) will be used for expenses related to the illness: "I recently bought a new machine for breathing and I’ll have to change the wheelchair. Surely the goal that I have is not to get rich with these initiatives, but to spread my story and through my words give hope to me and to others. The motto "Carrrico" was born years ago, playing playstation with some friends. It has followed me, it represents me and gives me strength". 

di redazione@varesenews.it
Pubblicato il 27 febbraio 2014
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