Ichthyosis Awareness Month

May 1, 2017

Real Talk: I was born with a rare skin disease called Lamellar Ichthyosis and since May is Ichthyosis Awareness Month I wanted to shed* a little light on this massive part of my life that I rarely talk about. No human being on the planet should have to summon some kind of bravery to share themselves as they are but that’s the world we live in so I’m going to be “brave” and share this publicly.

*pun intended

One look at these photos and I don’t have to explain the superficial hardships of being born with this condition, so rather than tell you a heartbreaking story full of self-pity I’m going to spin it in a lighthearted direction and tell you all the things about my condition that are actually pretty awesome.

Lamellar Ichthyosis (Luh-meller Ick-thee-oh-sis) is a skin disease characterized by a buildup of dry, scale-like plaques due to a fluke genetic mutation causing an overproduction of skin cells. So what does that mean? Well since the translation of Ichthyosis in Latin is “Fish Disease” it means I’m the closest thing to an ACTUAL MERMAID you’ll ever encounter. It also means I’m a real-life mutant who’d be on the B-Team at Professor Xavier’s school for budding superheroes. My superpower is growing and regenerating skin cells so if you ever need a skin graft, hit me up. My hair and nails grow faster than average as well, and though my healing abilities wouldn’t impress Wolverine they’re absolutely impressive to a regular human. Some other fun facts: I have misshapen ears from my skin being so constricting during infancy (one looks like it fell off an extra in Lord Of The Rings, and the other is less elf-y but still pointed) and because my skin is thicker than normal, I don’t have legible fingerprints.

What you’re seeing in the black and white photos is what my skin does roughly* 2-3 times a month (*Ha! More puns!). I use a topical prescription cream called Tazorac that forces my extra layers of skin to shed off so they don’t build up into thick, darkened scales. What’s left underneath is skin so fresh a newborn baby would be totally jealous, but this “normal” skin doesn’t last long before it starts to thicken back up and I start the process all over again. The photos I usually share online are always ones of me looking “normal” but the truth is my skin looks dry and rough more often than not, especially in the morning before a shower. My skin care routine involves intense exfoliating and moisturizing every day to tide me over between “Post-Apocalyptic Level Sunburn Status” aka Tazorac working its magic.

Because my skin is thicker it doesn’t allow me to sweat efficiently, or sometimes at all, so while the danger of heat exhaustion and heat stroke are very real for me, I also don’t have to wear antiperspirant and that’s pretty awesome. My skin can’t produce its own moisture either so every time I wash my hands or shower or do the dishes it’s absolutely essential that I put moisturizer on or I’ll crack like dried clay. Most days I wake up feeling like Tin Man before Dorothy found the oil can so if there was ever a zombie outbreak I’d be hoarding copious amounts of Cetephil in my bunker instead of canned goods and heavy artillery. Sometimes people compliment me on my “luminous glow” but really it’s just 85 layers of body cream – the secret is out! Yeah epic dry skin is painful, and some days wearing clothes feels like the physical equivalent of nails on a chalkboard, but with my constant regeneration of skin cells I’m at a lower risk of developing skin cancer and I might never have real wrinkles, so that’s certainly a positive side to being a part-time mermaid.

Having Ichthyosis has awarded me some pretty cool opportunities like getting out of gym class on many hot days and not having to swim in our gross high-school pool. But more seriously, for 14 years now it’s awarded me the privilege to volunteer at an incredible summer camp funded by the American Academy of Dermatology for children with chronic skin disorders like mine. I also lobbied in Congress with my family (my two brothers have the condition, too) and the F.I.R.S.T Foundation in the early 90’s to raise millions of dollars for Ichthyosis research. I was really young so I don’t remember a whole lot about that experience but still… I lobbied in Congress like a boss. #humblebrag

It wasn’t until I was 15 years old that I discovered Tazorac and started seeing clear skin for the first time. If you’ve watched the TV show Carnivàle and you know the character Gecko then you’ve seen me at full-blown Mermaid status (if it was 1933 I’d be making bank as the Alligator Lady in your local Side Show, no joke). I’ll be 30 this year, so for half of my life I was known as “that girl with the (insert cruel adjective here) skin”. I’ve dealt with my fair share of haunting anxiety, depression, and all kinds of torment, but if I’ve learned anything from growing up with Ichthyosis it’s you have to have a sense of humor and a positive outlook. No one can give that to you either, you have to invent it. Every. Damn. Day. I am solely responsible for my own mental and emotional wellness, that is something that I can control. I am in charge of my own self-worth, my state of mind, my motivation, my ability to smile and keep my chin up. That’s on me. No matter what your situation is, you also have the ability to do that – No excuses!

My drive to share these words and photos are obviously to raise awareness for such a rare and difficult chronic disease but to also remind people that it’s okay to be brave in this way. Your silent battles matter, too. I work really hard to stay up-beat and strong but the truth is I have tough, bad days. So does every single person on this earth. Talk about it. In order to invoke compassion, tolerance, and empathy in people they first have to be informed. By speaking up for yourself you’re providing the script for others to speak up for you in the same way. Never be afraid to give people permission to care about you.

I’ll leave you with one of my favorite quotes by Rudy Francisco – “Perhaps we should love ourselves so fiercely that when others see us, they know exactly how it should be done.”

Thank you for reading <3