Rare Disease Day 2021


Although XLH has been debilitating in so many ways, it has given me the greatest gift – empathy. Empathy is what I learned when I had to be vulnerable as a child to ask for help. Vulnerability is what I learned when I had to build trust with strangers. I reciprocated this trust by showing up for them like they showed up for me. And this trust is what led to all the great relationships in my life today. Empathy led to vulnerability which led to trust which led to love and friendships. So, the world might have been a lonely place without my XLH 😉


What do you enjoy most in life?


At what age were you diagnosed with XLH?

3 years old

Who or what makes you laugh?

My partner and friends

Who is your role model?

Bernie Sanders

What do you do to relax?

Read, listen to music, drink wine, visit the beach.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

Slippery floors!

What do you do when you feel sad?

Take time processing then talk to my partner/friends.

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

Yes, 6

What has living with XLH taught you?

Planning, optimization of logistics, buffer time, taking it slow, risk mitigation, mindfulness about others’ unique needs, empathy and compassion.

What advice would you give to others in your life?

Strong back. Soft front. Wild heart.” – Brené Brown.

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