International XLH AllianceInternational XLH Alliance

Rare Disease Day 2021

Ainhoa rare disease day 21

At what age were you diagnosed with XLH?

27 years old.

Meet Ainhoa!
Ainhoa is 27 years old. She has only recently been diagnosed with XLH with the help of a genetic test. She started supporting people with her condition in Spain very early on, without knowing that she was affected all along. She will continue to work hard for her fellow human beings so that they do not have to suffer the same fate and get a diagnosis so late. Ainhoa has learned that giving up is not an option and that you have to be mentally strong.
She enjoys yoga which helps her body and mind a lot. Her family means a lot to her, she loves to joke with her mother and husband and loves to watch her cats play.

AINHOA

What do you enjoy most in life?

Practicing yoga when I can it really helps my body and my mind.

Who or what makes you laugh?

To joke with my mum or my husband and also whatch my cats playing together. 

Who is your role model?

….

What do you do to relax?

Watch videos about facial treatments or whatch videos about ambiental music or nature sounds.

Are you receiving professional, medical treatment?

Yes, only phosphate.

Are you particularly afraid of something?

Yes, my health in the future, how I am going to be. Also, to have affected kids.

What do you do when you feel sad?

I like to sleep and I try to not think about anything.

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

None

What has living with XLH taught you?

I’ve learn that I have to keep going and to be strong mentally.

What advice would you give to others in your life?

To live today like as if it were the last one and to act with honesty and love.

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