She Has Ichthyosis Confetti, A Rare Genetic Skin Disorder, And She’s Opening Up About What It’s Like
In a viral video, 17-year-old Portia (@portiacina) is opening up about having ichthyosis confetti, a rare genetic skin disorder.
Individuals with this condition are born with red, scaly skin, with small patches of “normal” skin appearing here and there.
Both of her parents carried the gene for it, so she and her brother were born with this skin condition. She explained that their skin is made of a different protein than most other people’s.
The kind she and her brother have is called confetti because of the tiny dots of normal skin sprinkled all over their bodies.
Throughout her life, many people have asked if she just had a really bad sunburn or if the condition is painful. According to Portia, her skin is not painful or itchy at all.
However, she cannot sweat, so she has to be more careful in the sun to make sure she does not overheat. Body temperature regulation is a daily consideration that many might take for granted.
Other people have asked if she was able to blink. She replied that she could blink, but her skin gets pretty dry, so she does not blink as frequently as others do.
There are only 20 known cases of ichthyosis confetti around the world, so it’s quite unique that both she and her brother have it.
The odds of two siblings sharing it are astronomically low.
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Portia hopes to use her platform to educate others and raise awareness of ichthyosis confetti, a condition that most people probably have never heard of.
With each video she posts, she is changing how society views rare genetic disorders—starting with her own.
In doing so, she is not only normalizing visible differences in physical appearance but also reminding everyone that beauty and confidence go hand in hand. Some TikTok users praised her for speaking out, while others compared her skin to nature’s beauty.
“Omg, it’s like the shadows that sunlight makes, peeking through the trees,” commented one user.
“I hope this isn’t offensive, but the little spots remind me of a deer’s (in a compliment way, it looks so cool and unique),” chimed in another.
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