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?

Anything that gets the adrenaline pumping, things like cliff jumping, jetsking, motorbiking, go-karting, being shot up into the air. 

At what age were you diagnosed with XLH?

When I was 2 years old.

Who or what makes you laugh?


Who is your role model?


What do you do to relax?

I like to read/draw and paint.

Are you receiving professional, medical treatment?

Yes, I see a nephrologist, endocrinologist and orthopaedic Drs.

Are you particularly afraid of something?

Not being able to get back into my hobbies like hiking, surfing and bike riding

What do you do when you feel sad?

Listen to music or watch a movie.

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

Yes, I’ve had 12 operations, I’m 12months post op from having my right femoral osteotomy and pins and plates placed and Im currently waiting for my left Femur to be done. I had the Hako Braces for my lower corrective surgeries and many more arthroscopies and tendons repaired.

What has living with XLH taught you?

People don’t always take you serious specially some drs, so sometimes you might have to make them understand or force an issue until your heard.

What advice would you give to others in your life?

Live today like it may be your last because tomorrows not guaranteed.

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