Rare Disease Day 2021


At what age were you diagnosed with XLH?

At 6 months old.

A little story about achieving one's goals: When I was 5 or 6 years old, I was in hospital in Aschau after having my legs straightened, and from my room I had a perfect view of the landing area of the paragliders there. The idea of seeing the world from above was simply unimaginably beautiful. At the age of 15, after my fourth operation, my parents received me a tandem flight in the Allgäu. After that, it was clear for me that I had to learn this sport. Two weeks later, my father and I enquired at the flight school and I came out as an registered student pilot. Despite huge difficulties during take-off and a few falls on the practice hang, my will was unbroken. With the full support of my flight instructor and my parents, I managed to complete the training. This is now 10 years and hundreds of wonderful hours in the air ago.
What do I want to say with this story? For one thing: It may cost a bit more in terms of effort, but if you want to, you can realise almost anything.
And for another: In all that time, I never once heard, "don't do that, it'll never work with your legs." I was always allowed to try things out, and in my opinion that helped me immensely.


What do you enjoy most in life?


Who or what makes you laugh?

I can’t give a general answer like that. It depends on the situation, but I laugh a lot.

Who is your role model?

I don’t have a specific role model. You learn from many people.

What do you do to relax?

Paragliding, mountain biking and alpine tours/ski tours

Are you receiving professional, medical treatment?


Are you particularly afraid of something?


What do you do when you feel sad?

Half an hour of exercise in the fresh air and the world looks different again.

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

6 surgerys.

What has living with XLH taught you?

Taking my medication regularly as a child.

What advice would you give to others in your life?

In general, have fun in life, fight for your goals and don’t let yourself be distracted from them.

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