Rare Disease Day 2021

Annette Rare disease day

At what age were you diagnosed with XLH?


Meet Annette!
Annette is 44 years old and lives in Denmark. She was not diagnosed with XLH until adulthood, at the age of 36. She has already had 7 operations XLH as a result of her XLH. Despite the late diagnosis and physical barriers that she had to overcome, in addition to suffering from three strokes in 2017, she has pushed herself to experience life to the full. Annette says: “NEVER give up. Life is always worth fighting for.” Her son fills her with joy and she enjoys her time with him very much. While her daily pain and exhaustion are a challenge, she has learnt that she cannot control everything in life, but she can control how she reacts to these things. Nothing frightens her, she always tries to live in the moment. She comes to relax when she walks in nature, lifts weights, watches films and listens to music.


What do you enjoy most in life?

My son. He is my pride and joy

Who or what makes you laugh?

Many things. But especially animal videos

Who is your role model?

Hmmm. I don’t really have one. But there are several people that think are very cool. The Danish marine B.S. Christiansen, Maya Angelou, my Grandma and Dolly Parton 

What do you do to relax?

Walks in nature, weight lifting, watching a movie and listening to music.

Are you receiving professional, medical treatment?

Yes, I get treated vitamin d and calcium

Are you particularly afraid of something?

No, I try live my life in the moment.

What do you do when you feel sad?

Listen to music

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

Yes, I had 7 so far

What has living with XLH taught you?

That I can’t control everything. The only thing I can control is how I react to things that happens in life.

What advice would you give to others in your life?

NEVER give up. Life is always worth fighting for.

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