“On February 17th, 2008 – we started a brand new chapter of our lives when our youngest daughter was born – Casey. She was born a bright, lively, beautiful little baby girl who just happened to have been born with ichthyosis – a congenital condition primarily affecting the skin. It is an exceedingly raredisorder that can have many complications.
It is so rare, there is very little awareness of the disease. May is Ichthyosis Awareness Month – and through education, the ichthyosis community hopes to increase awareness. Awareness will hopefully reduce the challenges people living with ichthyosis face.
Imagine being a beautiful little girl, with a smile that lights up a room, with a laugh that is so infectious, you can’t help but join in – and imagine that child and how she would feel when another child says they hate her because of her skin. Just think about it. And imagine that child having to hear about it repeatedly from yet another child. It can have devastating effects.
This is what our Casey had to endure just last year at the age of 6.
As a parent, you strive to do the best for your child. We educate everyone who will listen. We prepared a presentation for the staff/teachers at the school she would be attending and with the encouragement of the school administration, presented it to parents of children who would be attending school with Casey. For the most part, it went very well. People were appreciative of the information.
There unfortunately continues to be people – adults and children – who blatantly stare at our beautiful daughter. There are whispers and pointed fingers. It can be rage-provoking, if I’m being honest. But mostly, we try to educate and increase awareness.
We’ve been doing this since her birth. When she was born, there was some debate in the delivery room of why she looked the way she did – and it was I who gave her skin condition the name, because I was familiar. My mother also lived with ichthyosis. Then came the specialist appointments – dermatologists, geneticists, ENT specialists, opthalmologist. And with a disease this rare, you find yourself doing a lot of research, and often educating these specialists. I was fortunate in being a registered nurse – it allowed me to understand the medial research I read and continued to search for.
When I found Foundation for Ichthyosis & Related Skin Types, Inc., it was a godsend. It allowed us to get advice, support and medical expertise. If you have an interest, it’s a great place to go. We now have an “Ichthyosis Family”.
Our Casey is one of the most amazing people I know. She is brave, strong, funny, sweet and beautiful. If you happen to have the pleasure of seeing or meeting her, say Hello. I love to answer questions, when asked respectfully and with kindness. She is a little shy until you get to know her – just like most kids her age. And that’s really the point, isn’t it?
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.