A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when … [Read more...]
Ecdysis. Tender soles.
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...]
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