Rare Disease Day 2021


Pietro is 15 years old and lives in Brazil. He was diagnosed with XLH in the second year of his life. He enjoys good medical treatment and has already had three surgeries in his past and is about to have a fourth. He enjoys spending time with his school friends and cousins, they bring him joy. Pietro says: " It doesn't matter that we live with a rare disease, we will be able to live a normal life and never lose sight of your dreams and pursue them, always."


What do you enjoy most in life?

Travel and sing

At what age were you diagnosed with XLH?

A 2 years and a half.

Who or what makes you laugh?

My school friends and my cousins

Who is your role model?

Famous singers

What do you do to relax?

I Sleep or use the cellphone.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

I have afraid of height

What do you do when you feel sad?

I eat a sweeties lol

Have you had any operations because of your XLH and if so, how many?

I’ve had 3 and I will go through the fourth

What has living with XLH taught you?

That it doesn’t matter how rare it is, we will continue to have a normal life.

What advice would you give to others in your life?

Run after your dream!

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