I have a 13 year old boy in grade 8 first year of high school. He has Lamellar Ichthyosis, he is getting picked on at school. Kids are calling him lizard boy. He is not talking to me about it but come home from school all grumpy. One of his friend told me daughter who also goes to the same school. What should I do to comfort him and get him to talk about it with me. Please help Carmen

Hi Carmen,
I was also picked on in school and didn't bother to talk to my parents about it - I didn't think they could do anything to help so why bother.
It was quite some time before I realized that simply processing it by discussion was helpful. I realize this post is a bit old but feel free to contact me.

Sarah

Hi Sarah,

How did you cope with it? I don't want him to dislike school. I want to help him. What can I do?

G'day Carmen,

It is about empowering your son, ensuring that he knows there isn't anything wrong with him as such and giving him strategies to deal with the ignorant of this world.

There are some great hints and tips on the UK's Ichthyosis Support Group Ichthyosis Support Group website. If you follow the links you will find Change Faces, who do great work for those who have a visible difference.

If I can help further, please contact me at your convenience.

Good Luck!

hey carmen im new but i have a daughter that is 13 with ichthyosis an she is going threw alot of the samething an dont wanna talk to me bout it so i have found that getting her a counslor helps sometimes they just need someone other then there mom or dad to talk to cause they dont wanna worry us me an her are really close an it hurts me everytime she comes home upset so I let her know that I love her an that im here for her

A lot of kids get picked on in grade 8, not just for ichthyosis. It seems to go with the age. The good news is that it won't last forever. I have XLI and of course I was picked on from about grade 7 - 8 onwards. By grade 10 - 11 students seem more accepting of each other's differences.

See if you can get your son to be the best at something in the school to raise his status. What is he good at?

I was a pretty good swimmer and became school age champion every year from about grade 9 onwards and represented the school at both swimming and water polo. After that no-one bothered me about my skin. For a while my nick-name was 'fishy' which was a reference to my scales of course but by Grade 12 my nickname was one that referred to my hairdo, not my skin.

So try and have your son gain a 'profile' at school that is about something other than his skin. It might be a hairdo, or a musical talent, or a sporting achievement or even academic success.

I like the idea of getting him to what he wants to go. that's the way he would love to do whatever he wants to do