Mikhael’s testimony: My everyday life with Dyskeratosis Congenita

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.

Many ask me how I feel. Imagine a pillow pressed against your face and preventing you from breathing in. Imagine you couldn’t take it off. Imagine that the only hope is to reach the cylinder with oxygen and increase the flow.

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.

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