Ichthyosis Awareness Month: Ian’s story. “I know bullies sound bad but I thank them because of them all I know what true friends are.”

I first started talking to Ian (though I know him as Pery) on Facebook at the start of this year. He is a regular contributor to the FIRST YAWI Facebook group. Ian struck me as a very smart, kind and fun loving teen. He’s a senior in high school and has been preparing for the prom (a formal as we call it in Australia). I wish him and his prom date all the best for that night, and hopefully the future. (Since he sent me this story, he went to his prom and here he is with his date, Danielle!)

Ian writes about his struggles with bullies, and how he’s become strong enough to turn around these negative experiences into positive ones by educating people about his skin in fun ways.

He’s such a good role model for young people with Ichthyosis. And he’s been a superstar in sharing the posts for the Ichthyosis Awareness Month Blog Project – his commitment is appreciated!

Meet Ian. He’s got congenital Ichthyosis form Erythroderma.

“Hi everyone my name is Ian Mense. I have had bullous congenital Ichthyosis form Erythroderma. I have lived in U.S. all of my life in the state of Virginia.

I do have a ton of friends around the world. I have been beaten up shoved around and picked on since I could remember. whether it was by kids, adults, or my doctors. I was always treated like a lab rat at the doctors office. Now I am 17 still happens but it is getting better. It is nice to have my friends back me up and make me laugh though they always brighten my day.

I have had my skin all my life. The one thing I always was always asked whenever I went somewhere was “OH MY GOSH what happened to you?”. They thought I was either burned or I was covered in sand.

So that got me thinking since I have always been ridiculed and made fun of my skin, and I hid it what can I do? Recently I joined a cosplay club at my school were I found some good friends as well and it got me thinking of doing a cosplay incorporating my skin. So I plan on doing a sand man cosplay with me finally wearing shorts.

I also recently joined a group where I finally meet a girl with my skin she and I have two different past. But one same thing is to try and help each other the best we can. And without her my friends my family and a lot of other things this life would just be horrible.

I know bullies sound bad but I thank them because of them all I know what true friends are. Through these experiences I gained a lot of traits in which people are happy with. And I learned what I want to do with my life.

(These pics are of my friends who act like my family who have had my back more times then I can count.)

(This is my family – they have done a lot for me and have lost a lot for me and I love them for that.)

You see all these people have done incredible things they have either taught me a life skill, or even better they have been through the dark depths of tatris with me they stand of for me and care for me. My family has had a hard time to go through due to my skin mainly and I thank them so much for barring with me through it. And that is why I love and care for them like they have my back I have theirs.

And to all that read this, never judge a book to fast just by the cover because what is on the inside it might just surprise you. I am also an open book if any one has any questions feel free to add me on FaceBook and talk my name is Pery Ellis.”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.