Liliam’s Colour » International XLH Alliance

Rare Disease Day 2021

At what age were you diagnosed with XLH?

Diagnosed at 2 years of age.

Is there a particular story you'd like to share with us?
I started my surgeries when I was 11 years old. Ever since I had the use of reason, I knew one day those devices on my legs would be removed and that they had to operate on me. The day my surgery was scheduled, I jumped with excitement in the office. I didn't know what I would face. But it happened and here I am. I did 4 surgeries with 11 osteotomies, and 30 nails and 2 künchers. My greatest pride is my scars, they are the mark of my new beginning, I used for 9 years a pair of shoes with metal and straps. My first sandals at 17 years old with a cane in hand. Today neither cane nor crutches nor anything similar. It can be done with effort and with faith in God.

Liliam

What do you enjoy most in life?

I do exercises, swimming, spinning and climb Ávila (mountain that surrounds Caracas)

Who or what makes you laugh?

My daughter. I enjoy it to the fullest.

Who is your role model?

haha I don’t know who. Myself hahaha.

What do you do to relax?

I listen to music, sing and go for a walk.

Are you receiving professional, medical treatment?

Yes, with professional medical treatment (phosphate solution + calcitriol + vitamin D).

Are you particularly afraid of something?

I am afraid of a wheelchair and kidney damage.

What do you do when you feel sad?

I write.

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

11 lower limb osteotomies with the use of external fixators (ilizarov) and plates that I still have in both tibiae.

What has living with XLH taught you?

I didn’t learn anything out of the ordinary or usual. Since I was born with this condition and it is the only lifestyle I know. I do everything of a normal person. As such, it costs me a little more than others, but I simply don’t notice a difference in what is normal and what is not.