I have never understood this green meme that pops up every Ichthyosis Awareness Month. It seems aggressive and unhelpful.
Maybe it could be reworded to:
“Until I had a child with Ichthyosis,
I didn’t know anything about this rare, severe skin condition. I wish more people knew. Now I do know there are many Ichthyosis support resources out there – google “ichthyosis” for more information from support groups and individuals. It takes a village of allies to support a child with Ichthyosis.”
(Signed, an adult with ichthyosis.)
Resources
Some great organisations to seek out are:
Ichthyosis Support Group UK (LinkTree with more social media links)
Ichthyosis Association France (LinkTree with more social media links)
EURODIS – Rare Diseases Europe
South Asian Ichthyosis Network
Australian Ichthyosis Support Group
Centre for Related Members India.
Luke and the Tiger children’s book
I’ve also written lots about ichthyosis on this blog; as well as a book called Say Hello.
Feel free to share this meme below!
Images: 1. A collage of two memes, stacked on top of each other. The top is green with black writing. It reads: I understand you’re not an Ichthyosis parent, so spreading awareness isn’t a priority. But the day before my child was bom I was not an Ichthyosis parent either.
www.firstskinfoundation.org”. An illustration of a white child is next to the text.
The bottom is a rectangle white with black text, it reads: “Until I had a child with Ichthyosis,
I didn’t know anything
about this rare, severe skin condition. I wish more people knew. Now I do know there are many Ichthyosis support resources out there – google “ichthyosis” for more information from support groups and individuals. It takes a village of allies to support a child with Ichthyosis.” – CarlyFindlay.com.au is at the bottom. 2. A square cut of the second quote.
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