I have a lifelong skin genetic skin condition called ichthyosis form erythroderma. It means scaly red skin. I was born with it and it will probably never be cured. When I was 10 years old, I was diagnosed with another variation of ichthyosis called Netherton’s Syndrome. For me Netherton’s Syndrome is not much different to the variant of ichthyosis I was born with, except I now know that it affects my hair.
Here is some information from the ichthyosis website. You can read more about ichthyosis there, too.
Ichthyosis (ick-thee-o-ses) is the name of a rare genetic skin disorder. Since it’s a genetic mutation, it isn’t contagious–you can’t “catch” it. Ichthyosis causes the skin to build up and scale, causing it to be extremely dry, among other problems.
Most types of ichthyosis are present at birth, and are life-long. Currently, there is no cure, only treatments.
I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily – generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.
My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to a degree. I see lots of doctors!
While it is medically challenging, the social challenges can be even more difficult. I am stared at, commented on and teased every day. I try to deal with peoples’ questions and rudeness the best way I can, with a smile and a polite answer (most of the time). Sometimes all I can do is laugh at the stupidity of some people!
I hope this blog educates you about ichthyosis and the challenges of living with a chronic illness.
If you have any questions, please ask.
Please visit my Ichthyosis and appearance diversity resources page for more useful links that may help you!
You can help to raise money for Netherton’s Syndrome research here – this cause is run by Jack Oldacres’ family and friends.