CYSTIC FIBROSIS PATIENT

Hello, my name is Alessandra, I am 36 years old and I have Cystic Fibrosis, a respiratory deficiency that limits my daily activities.

I need medication for life to prevent my lungs from collapsing, this implies permanent treatment with steroids, oxygen therapy, control of oxygen in the blood and antibiotics to prevent the development of bacteria in the lungs.

You don't know the suffering and uncertainty that having rare and serious diseases produces. They change your life forever.

It doesn't matter all the effort you put in, all the desire, my illnesses are always there and they can always do more. We have been taught that if you want you can, that effort equals reward. However, in chronic degenerative diseases, the rules are not the same. No matter how much you want, you can't, no matter how much will you put into it, you can't. But one continues to do so, takes fear by the hand... and continues to live. Because you have to live, you have to live until the end. The only thing that is in your power is to learn to manage the fall and get up again and again. And so every day. The path ahead is not easy at all, but thanks to the professionals and people around me, at least I have a path.

An advice.

Embrace and love a lot, be thankful every day, put pride aside and do everything that comes from your heart. Life is so unpredictable that sometimes it reminds us that our time here is temporary.

Today we are here, tomorrow we do not know.

Anything helps, we are very grateful.