Hiya, my name is Carly, and I am 18 years old from australia. I was born with ichthyosis form erythroderma, and later diagnosed with nethertons syndrome at the age of 10. The doctors did not think id live much past birth but i proved them wrong, and have gotten through primary and secondary schhol, and am well into a electronic commerce degree at university (which i hate, but thats another story).
School was hard, i got teased a lot, highschool may have been worse because I was excluded so much due to my appearance. But I gained a bit of respect too, which helped.
Last year, I got my first job, iwork at Kmart, and so far it has been good. of course, i get the odd comment about my skin, but I am usually quite polite about it.
My hair has been a problem, due to the netherton's syndrome, it has broken off a lot, at one stage i had many bald patches. It is shoulderlegnth now, the longest it has been ever. And the redness on my body has decreased with age, but it is still red on my face. I have take tigason too, but it did not react well with my body, i lost a lot of skin and weight. So I stopped that after about 3 months.
Socially, university is great, I am accepted and happy with my friends there. I have had a boyfriend too, he was very accepting of me, (but my vaseline did not do any justice for his acne, nor did my snowflakes of skin on his black t shirts!!) and being with him gave me a lot of confidence i never knew i had.
My parents found it difficult when I was younger, I was very demanding. i was hospitalised maybe 3 times a year, and this meant my mum would take a lot of time to stay in melbourne with me. They often find it more distressing to hear the comments and see the stares i receive, i seem tohandle it better than them. I was also taken to many doctors and conferences when I was a kid, but since the age of 15, I made up my mind i was happy enough and some of the "miracles" they offered just did not exist for me.
My motto is, "at least i am healthy on the inside, i could have a liver problem or something that is fatal...plus my skin will always grow back...lol...no matter how much i scratch!"