What Makes Me Me

The story of Amber

My name is Amber Brine and I am from Queensland, Australia and this is my story. I was born with an extremely rare condition called Ichthyosis, a condition that affects one in 250000 people worldwide. There are many different types of Ichthyosis which each have very different severities. I live with netherton’s syndrome.

My condition causes me to get extremely dry, red, itchy and sore. Throughout my life I have tried endless creams and medications to keep my skin at bay.

My daily routine often includes going for showers twice a day and maybe an extra one if needed. I apply moisturiser and ointment to my whole body twice daily.
And apply touch ups during the day. I take medicine such as telfast which helps to keep any itching or soreness I may have at a bearable level, I also take an antibiotic which helps to keep infections that may be running through my body away.

Because of my skin condition doctors thought that I wouldn’t get much taller than someone’s hip. So they put me on a growth hormone in the hopes to make me taller.

Through the past fifteen years of my life, my condition has made me realise that I am so much stronger than I may think. So to all my people out there who may be putting up with their own rare disease just know that it will all be worth it in the long run.