Rare Disease Day 2021


I would like to tell you that my biggest dream is that a specialist doctor can perform a reconstructive surgery on my legs, in Peru it is very difficult to find a doctor in the social security that can perform an operation, I tried many times here in Peru, but they tell me that my case is very complex and difficult.
I dream every day of having my legs straight, so as not to feel much pain, it is difficult for me to walk with the cane, I have the beginnings of scoliosis and my ankles have started to hurt more much more.


What do you enjoy most in life?

Work and travel.

At what age were you diagnosed with XLH?

At 2 years.

Who or what makes you laugh?

My nieces and my little brothers.

Who is your role model?

My mother.

What do you do to relax?

I like of rest, go to the beach and swim.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

Yes, to fall when I am walking, to jump and to use a cane forever

What do you do when you feel sad?

I cry a lot, I lock myself in my room, and I would like to sleep just sleep.

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

None, there are no specialist doctors in my country.

What has living with XLH taught you?

That I always have to live in pain.

What advice would you give to others in your life?

That they enjoy their health and support others, that they be aware of people who suffer from rare diseases, and that they do not discriminate.

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