Rare Disease Day 2021

Kim Rare Disease day

My illness actually made me step on the gas extra. Otherwise, I probably would never have started learning bass guitar, playing in various metal bands, or eventually ending up as a sports reporter on the radio.


What do you enjoy most in life?

Sauna, swimming and listen to music.

At what age were you diagnosed with XLH?

When I was 3 years old.

Who or what makes you laugh?

The TC Show: heute-show

Who is your role model?

Bruce Dickinson

What do you do to relax?

Sauna and listen to music.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

I am afraid that due to the wrong or not correct medication my kidneys can calcify.

What do you do when you feel sad?

Music just always distracts me.

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

Yes, I had already had 12 operations.

What has living with XLH taught you?

To live with taking pills every day.

What advice would you give to others in your life?

Always follow your gut

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