Rebekah is coming across the ditch from New Zealand for the Australian Ichthyosis Meet this Saturday. I am really excited that she's making the trip, and that I can meet someone around my age with the condition. I've known her online for around three years - and see she leads a very active life. She has Lamellar Ichthyosis.
"I've had Lamellar Ichthyosis since my birthday. I am 32 almost 33!! And I live in Christchurch, New Zealand.
Growing up was scary and isolated, though there were plenty of good times and experiences as well.
I work full time and study classical piano performance at diploma level as well as normal social events as well
I work in a call centre and I like doing anything that involves music art or culture - I am a classically trained pianist - I enjoy sports as well although sometimes health issues prevent me from participating.
Being busy keeps me out of mischief.Through living a full life - it gives me self confidence and worth, like contributing to society in a positive way.
Barriers for me have been people not understanding that having different skin doesn't mean anything is affected. I've experienced people who think I'm stupid because of my skin.
My message for young people with ichthyosis is: live life to the fullest and give everything a go and focus on the positives. I'm a "glass half full" kind of girl. Surround yourself with positive people who support and love you for you.
YES I am excited about the meet up for many reasons but mainly I will get to meet someone who "actually understands " what its like and can empathise on every level."