Cassie’s story shows that the bullying she faced at school has stuck with her to this day, and she is more self conscious because of it. However she’s very optimistic for her children’s confidence – four of her children also have Ichthyosis.

She’s got Ichthyosis Bullosa of Siemens – her skin is very prone to blistering.

Cassie has a beautiful family – a husband and five children – something she never thought would happen.

Meet Cassie.

“Hi my name is Cassie I’m 32 from Minnesota and I have Ichthyosis Bullosa of Siemens – a variation of EHK. Having Ichthyosis I believe has made me a more self conscious person with a lower self esteem but in other ways it has made me a better person by teaching me first hand how cruel people can be to others with visible differences.

I never thought I’d get married and have kids but now I’ve been married for almost 15 years and we have 5 children 3 sons and 2 daughters. Four of them inherited the Ichthyosis from me – 2 boys and the 2 girls.

Growing up with Ichthyosis was a HUGE challenge for me having to deal with bullying and health issues. I remember being called “Gator” and “Lizard Girl” throughout my school years and to this day I will hide and cover as much skin as possible when in public and even around family.

 

My children are much more secure in their appearance than I am so I’m thankful that although they did get the short end of the 50/50 chance of inheriting from me I was able to HELP them be secure in their own SKIN.

Ichthyosis can be and will always be a part of my children’s and my NORMAL. Someday I hope more people realize that the term NORMAL is not easily defined and everyone has their own NORMAL which is different from anyone else.”

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.