Rare Disease Day 2021


It was an immense happiness when I was able to get Burosumab from the pharmacy, my parents did not tell me where we were going and when I saw that it was the “vaccine” medication as I speak. I went to the clinic after taking the first dose. In Brazil, sometimes there are delays for the Health System to deliver the high-cost medicine.


What do you enjoy most in life?

Of salad.

At what age were you diagnosed with XLH?

She was diagnosed at 1 year and 10 months.

Who or what makes you laugh?

Tickling the belly.

Who is your role model?

My mother.

What do you do to relax?

Beauty and relaxation mask.

Are you receiving professional, medical treatment?

Yes, I am.

Are you particularly afraid of something?

Fear of having another leg surgery.

What do you do when you feel sad?

I hug my mother.

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

Osteotomy of tibia on both legs.

What has living with XLH taught you?

That it doesn’t matter if you’re rare, what matters is having best friends with you.

What advice would you give to others in your life?

Live the way you want.

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