Hi! I'm Nicole and I have Lamellar Ichthyosis
Lamellar ichthyosis is a rare genetic disorder (that means you have to be born with it) that happens only once in about every 350,000 babies. That makes me pretty unique!
For the most part I like my skin and having ichthyosis. I think its neat how my skin is dry and makes really cool patterns but I don't like how my skin sometimes cracks open and bleeds by my toes. I also hate it when my skin itches.
Kids at school usually don't tease me and now its like my best friend Sewheat doesn't even notice it.
Sometimes its tiring answering questions about my skin because I have to say the same things over and over again. However I would still rather have people ask me about my skin than just stare at me funny!
My ichthyois makes it so that my body can't sweat, so I can get heat stroke really easy. I can't spend much time outside when its warm but I can still swim in my pool in summer.
The skin around my eyes is really tight so when I open my mouth wide, my eyes droop like a bassett hound puppy.
My family and friends think that this is cute!
I do feel very lucky because my kind of ichthyosis (Lamellar) isn't as bad as some types you can have.
I want people who meet me to know that you can't catch my ichthyosis - you have to be born with it
and that I am a good ,caring friend to have because I don't judge anybody. I like to be treated just like a regular kid.
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