I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.The process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and … [Read more...]
Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken – the Dutch Association for Ichthyosis Networks.
My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks. She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) … [Read more...]
How to cope with the emotional aspects of Ichthyosis – suggested by people living with the condition.
One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus on raising awareness, which is GREAT, but it's hard to find any tangible ideas for children, … [Read more...]
Choosing clothes to accommodate ichthyosis.
I often get asked why I cover up so much. Am I hiding my skin condition? Am I cold when it’s really hot? Am I sure I’m not hot?!I don’t go out of my way to hide my Ichthyosis. I am very proud of who I am. However, I do cover up to be comfortable. Wearing layers helps to protect … [Read more...]
Ichthyosis Awareness Month: Crystal’s video
Today as part of Ichthyosis awareness month, I'm sharing a video from Crystal.She talks about the difficulties of getting and keeping a job - employers discriminate because of her skin. I hope she catches a break soon. Many people think Ichthyosis is *just* a skin condition, … [Read more...]
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