Rare Disease Day 2021


Joanny is 12 years old and lives in Brazil. She was not diagnosed with XLH until she was 10 years old and has not had any surgeries yet. Her rare disease has taught her that she is beautiful just the way she is. She enjoys spending time with her family and Vanessa Giovanna is her role model because she inspires her a lot. To relax Joanny likes to dance and listen to music. Joanny says: "Everything that happens in our life has a purpose and is planned by God."


What do you enjoy most in life?

My family and friends. 

At what age were you diagnosed with XLH?

With 10 years. 

Who or what makes you laugh?

My friends, my family and the memes.

Who is your role model?

Vanessa Giovanna, she inspires me.

What do you do to relax?

I like to dance and listen to music to relax.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?


What do you do when you feel sad?

When I feel bad I like listening to music.

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

I did not undergo any operations.

What has living with XLH taught you?

That I’m beautiful the way I am.

What advice would you give to others in your life?

That everything that happens in our lives has a purpose from God.

share on