Rare Disease Day 2021


I got the diagnose, when I was 14 years old, the doctors did not know XLH at the time. I was a relief to get a diagnose. I have a good life in spite of the disease. There are many things I can not do or many things there are difficult to do, but you find a way to do things in your own way. I am committee member in XLH patientforeningen Danmark, it is only 3 years old union and there is still a lot to learn and to do.


What do you enjoy most in life?

My family, friends and a good book.

At what age were you diagnosed with XLH?

At the age of 14.

Who or what makes you laugh?

I laugh of many things, I have granddaughter who makes lots of jokes.

Who is your role model?

My mother, she is 91 years and still going strong.

What do you do to relax?

I read, knit and do jig-saw puzzle

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

No, not really.

What do you do when you feel sad?

I place my self in a good chair an knit

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

11 surgeries.

What has living with XLH taught you?

Be optimistic and positive it helps you through hard times.

What advice would you give to others in your life?

Be positive, don’t let the disease control your life.

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