Rare Disease Day 2021

Fenna Rare Disease Day

My teachers were always worried back then because I had a lot of catching up to do because of the surgeries. I always wanted to go higher, faster, further. One day, I finally managed to climb up the long pole in kindergarten. My teachers were totally amazed! ...Usually only preschoolers can do that!


What do you enjoy most in life?

Doing sports

At what age were you diagnosed with XLH?

About when I was 2.5 years old. 

Who or what makes you laugh?

My father

Who is your role model?

My mom is my role model.

What do you do to relax?

That I like to read.

Are you receiving professional, medical treatment?

Yes, I am.

Are you particularly afraid of something?

No, nothing at all.

What do you do when you feel sad?

Resting and cuddling with my cat.

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

I have already had 4 surgeries in my life.

What has living with XLH taught you?

That I always have to catch up on a lot of lessons after the hospital.

What advice would you give to others in your life?

Enjoy every day and don’t complain about nothingness.

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