I was 12 when I was diagnosed, but the disease triggered fibrosis in the lungs. Fibrosis that had been dormant all my life and started to get worse abruptly only 1 year ago. My lungs started to stiffen like a drying sponge.
Today fibrosis is part of my daily life. It is treacherous because at rest, even with a tube in my nose, I forget about it, not feeling pain.
But when I make the slightest effort – to get up, take a few steps – it reminds itself: I have trouble breathing, and it’s scary. I have to stop quickly to recover, with the help of my oxygen cylinder.
The most difficult thing for me is the impression of being a burden on my family: my wife has to manage the cooking alone because it is risky to bring my oxygen tank too close to the gas stove; putting to bed my 15 month old daughter is impossible; changing her diaper is very difficult and wears me out for the day.
I continue the fight, with the support of my family and my relatives.
Beyond my fight, I want this campaign to help advance the treatment of this disease, to make it accessible to as many people as possible.