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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...

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 me from the sun, the cold and from scratches and bumps I encounter from living life. Sometimes I wear...

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, nowhere near a disability. But the barriers that Crystal and others face are similar to the barriers many people with a range of disabilities experience too....

On Friday, I stepped out of work to do a speech at pretty exciting event. You can read about that on my Facebook. About 15 minutes before I left for the event, my tooth broke. I wasn't eating anything. It just broke after I poked it with my tongue. It...