Rare Disease Day 2021


Sometimes people ask “why because to give birth to children knowing about the diagnosis.” Our diagnosis is being treated and you can live a long time. The main thing is to start earlier treatment. The tests that are associated with operations are an opportunity to understand how strong you are, and you can accept and carry this cross with dignity and leave your mark in people lives.


What do you enjoy most in life?

Travel and communication.

At what age were you diagnosed with XLH?

At 37 years.

Who or what makes you laugh?

Love for people.

Who is your role model?

There are many examples.

What do you do to relax?

Two days of outdoor recreation.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

I am not afraid of anything. Life and the Bible taught me this.

What do you do when you feel sad?

I relax and watch movies.

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

Yes, I have had 8 operations.

What has living with XLH taught you?

The diagnosis is not a definition you can live with it and be happy.

What advice would you give to others in your life?

Love life and people and god. Life is unique and you need to live not regretting anything.

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