Ichthyosis: Questions, Tips, and Support

I was born with Ichthyosis vulgaris—basically "fish skin." It’s a rare skin condition that doesn't affect many people.

There isn't really an adequate cure for it. Growing up, my parents were told it might just clear up once I hit puberty... 🤣 well, puberty was a long time ago.
During the summer, things tend to improve because of the sun and the ocean water.
When I was little, my dad used to go out of his way to bring me seawater in the winter just so I could soak in it in the bathtub. 😍
I've ended up "testing" almost every cream out there on my own skin, mostly because the stuff my dermatologists prescribed didn't do a damn thing.
I don't know anyone else dealing with this, so if you have any experience or tips, please reach out. 🙂

I don't know you personally, but I'm sending you a huge hug. Honestly, I can't imagine how tough it is for someone your age dealing with this 🙂
really hope you find someone to talk to who actually gets what you're going through!

analogbison13 said:I don't know much about it either, but I'm sending you a huge hug. I know it can't be easy growing up dealing with this kind of stuff. 🙂
I really hope you find someone you can talk to about your own experiences!

😁 Thanks so much for the support... Honestly, it doesn't bother me as much anymore. It was a totally different story when I was younger. 😢
Back in elementary school, they used to call me "Zebra," but hey, what doesn't kill you makes you stronger, right? 😉

I used to avoid crowded beaches too—I spent entire summers hiding out in long shorts 🙂 but these days, I'm over it.

It still bugs me a little when I catch someone staring, though; if that happens, I'll just step up and explain what's going on before they even ask.

My skin is actually in great shape now. It’s not nearly as dry or flaky as it used to be since I started using CeraVe about eight years ago. Nowadays, I use Cetaphil and my skin has literally recovered... eventually, I even got to the point where I could wear cute tank tops instead of turtlenecks because the patches on my neck almost completely vanished. 😍

Dana Morris24 said:I was born with Ichthyosis vulgaris—often called "fish skin"—which is a rare condition affecting only a small number of people.

There isn’t really an adequate cure; my parents always told me it might just resolve itself during puberty... 🤣 well, puberty passed a long time ago.
During the summer, my skin tends to improve thanks to the sun and the ocean water.
When I was little, my father used to bring home seawater in the winter just so I could soak in it in the bathtub. 😍
I have essentially become my own guinea pig through constant "testing"—the creams prescribed by my dermatologists simply didn't work.
I don't know anyone else to swap experiences with, so I would truly appreciate it if someone reached out. 🙂

Dear Dana Morris24, I have a nine-year-old daughter with the exact same diagnosis, Ichthyosis vulgaris. We would be very happy to connect with you to share our experiences. 🙂

I am currently struggling with ichthyosis and would be incredibly grateful if anyone else dealing with this condition could reach out to me. I am looking for advice on effective treatment options. I have spent years trying to manage this condition, but unfortunately, I haven't found much success yet. If you have any experience or insights to share, please let me know. Thank you so much!

I’ve been dealing with this same condition myself, though it didn't hit me until much later in life. I'm still searching for a cure.

Dana Morris24 said:I was born with Ichthyosis vulgaris, or "fish skin." It’s a rare skin condition that doesn't affect many people.

There isn't really an adequate cure. My parents were told it might just clear up during puberty... 🤣 well, puberty passed a long time ago.
In the summer, my skin actually improves thanks to the sun and the ocean water.
When I was little, my dad used to bring me seawater in the winter so I could soak in it in the tub. 😍
I’ve basically found all the creams that work through trial and error on my own skin, because the stuff my dermatologists prescribed didn't do anything at all.
I don't know anyone else I can swap experiences with, so if anyone wants to reach out, I'd love to chat. 🙂

Hey there.

If it helps at all, I deal with the exact same thing. 🙂 I live in Switzerland and can recommend three specific products: The first two follow a similar routine—there's a body wash and then a cream to apply after you dry off. One is called Aquaphor and the other is CeraVe. The big plus with these two is that they actually smell decent. If you stick to them daily, you might actually make it through the winter without looking like you have fish scales. 🙂 Then there's this third one called Neutrogena. Its strength is that it clears up patches very quickly, but the downside is it causes intense itching, which can lead to raw skin, and the scent isn't great. My advice? Use the Neutrogena on the worst spots until the patches clear, then switch back to Aquaphor or CeraVe once things settle down. P.S. I read recently that a university in Germany discovered an ingredient that actually treats this condition. They even received an award from the European Union, but the catch is that big pharma companies aren't interested in manufacturing it yet since the disease is so rare. They're hoping the European Union will use these kinds of incentives to push pharmaceutical companies to start production. Hang in there; dealing with ichthyosis takes serious grit. 🙂