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Ichthyosis Awareness Month

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
-Rochelle

  • Very brave of you to share this and make people more aware, great post. x

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  • Jessica Leigh Lewis

    Hi Rochelle! My name is Jessica Lewis! Your FIRST article has been absolutely inspirational! I too have ichthyosis! I’m interested in connecting with you to hear more about your story!

  • Cynthia Bremmer

    I read your article in Ichthyosis Focus since I’m a member of FIRST and also have lamellar. Your photos are much clearer, interesting and beautiful when viewed on the computer and what you have written in Lucky Lucille made me smile. Thank you.

    Now to share treatment ideas. I haven’t ever tried Tazorac and may do that–at least a test on part of my body. But I use two creams alternately and can keep my skin looking mostly normal without the noticeable shedding: Calmurid (not a prescription that I order from an Australian Pharmacy) and acetylcysteine/urea 10/5% cream that is a prescription which is compounded for me locally. I put the acetylcysteine cream on at night and in the morning my skin is silky soft. You might want to give one or both of these a try too. It would be fun to chat sometime!

    • Jessica Leigh Lewis

      Hi Cynthia! My name is Jessica! I also have Lamellar ichthyosis! I would love to chat and learn some of the different regimens you use!

      • Cynthia Bremmer

        Hi Jessica. I just now saw your message and would love to chat and share more too. Should we keep sharing this way or would you like to have a phone chat?

  • Wow. I’m so glad I found this. I was looking up how to block print and ended up on your site. I admire your bravery, and I actually think the photographs are beautiful and fascinating. Thanks for sharing your story, and letting others know they are not alone in their struggles! You are beautiful!

  • Margo Bergman

    Thank you for sharing your story and more importantly….your lovely heart and joyous spirit! You are an inspiration.

  • Loved your quote by Rudy Francisco I copied and pasted it in my fb 🙂 You are a true inspiration to us all – so steady and prevailing a spirit.

  • Thank you for sharing your story. I had never heard of this condition before. You have such a great attitude. Very inspiring! xo

  • Naomi

    I think it’s great you’ve shared this Rochelle, I really had no idea this was even a condition. I think you’re so right it saying that in order to invoke compassion, tolerance and empathy we first must be informed. Not just about this topic either – there have been a few sewing bloggers now who have shared their personal experiences and it has made a big impression.

  • Genevieve

    OH my goodness Rochelle! I had no idea there was any type of support/foundation/organization (or whatever) about Ichthyosis. I have grown up with this, sometimes embarrassing skin disease…I am now 50. I love that you’ve shared pictures…I look almost exactly the same ????. I have embarked on starting my own business as a #girlboss selling skincare and cosmetics by SeneGence. This stuff is amazing. I am not saying this to get your business, I just find it serendipitous that I’ve just stumbled upon your blog post and feel so comforted that I am not alone in this “fish disease” known as Ichthyosis. If you’d like to to know more or get in touch with me, email me at genevieves.luxe.lips@gmail.com or my Facebook Geni Arthur (friend me and I can add you to my group Genevieve’s Luxe Lips. Again, thank you so much for posting about this rarely talked about skin disease ❤️
    Genevieve

  • Chris Griffin

    Hugs! I love your sense of style, the way you talk about your animals and your patterns. In my little time-capsule view of you, skin is just another layer* (*yes, I did that).
    Thank you for being you 🙂

  • Lynsey

    You are so beautiful in and out, I love your sense of humour and positivity and so many can learn from you, including me ????

  • Mary

    I love your sense of humor and believe it does more than anything to get you through some of the bad stuff. I have chronic daily migraines and I know if I didn’t laugh at my life, I wouldn’t be here writing to you. By the way, your ears are adorable! Keep on being brave, talking about your disorder takes the power away from it and gives it back to you.

  • darby logan

    Thank you for sharing your journey. I too have a rare skin disorder, called acute currata derma . Basically too much keratin, so thickening and punctated areas on the feet, hands, and other pressure points creates MEGA callouses with underlying boils. And the bigger issue is the link to GI cancers. I admire you so much for talking about your challenge. I never speak of mine, only to my DRS., it all makes me hate me. Darby

  • dilladop

    What a lovely young woman you are and you have a beautiful smile!

  • Kelly Lopeman

    Really really loved this! My son has an ichthyosiform dermatitis combined with psoriasis (honestly, it’s undiagnosed, still, and he’s 25). It’s been a really difficult battle that has created other issues with addiction, health, and depression. I mostly share that to ask for good thoughts going his way…and to say THANK YOU for sharing your story in such a vulnerable and beautiful way.

  • Kristie Hammond

    As the mother of a daughter with a rare disease, I want to say thank you. Thank you for your courage in speaking openly about it. Thank you for educating me about something I had never heard of before. And thank you for the wisdom in your words, and your positive approach to life. I’ll be forwarding this to my 26 year old daughter to read.

  • LilyCerise

    Thank you for this post. It inspired me and was just what I needed. Your pictures are incredible and so beautiful ! I am really moved by what you wrote!

  • Cat

    Incredible post. Thank you so much for sharing. I have learnt about a condition I knew nothing about; I have been reminded that what we see on social media is not the whole story; I know that we only see part of each other unless we choose to share and understand.
    I love the quotation at the end.
    i am inspired by your positivity.
    I read the other day that the enemies of our society today are the combination of self-pity and entitlement and I would be inclined to agree. You demonstrate the opposite of these things in this post despite challenging circumstances. Thank you again.

  • Patti Spraggins Winfield

    Thank you for being brave. I’m sure reading your story will help many who share this condition with you.

  • Wow! This is so interesting! Thank you for sharing this post, I have learned so much. I want to say thank you for being brave, but I agree with you, bravery is not needed to share yourself. You are a beautiful human just as you are! Inside and out. Thank you for this post and I love your sense of humor and your outlook. So much wisdom there – no one can give you or take sense of humor and outlook from you 🙂

  • Rose in SV

    Wow! I’ve been reading your blog for over a year and while I knew you had a skin condition, I had *no* idea of the extent of your situation. Thank you for sharing–I learned a lot.

  • LUCIANA A MARCUCCI

    Parabéns pelas lindas e sábias palavras!
    Minha filha tem 6 anos e tem ictiose congênita bolhosa!
    Suas palavras são inspirações para ela e para nós!

  • alex

    I love this so much. We share so much in common!! I have ichthyosis as well as psoriasis on my scalp! I love your positive outlook!! You are beautiful!!

  • Michele Menzia

    Great story. I have also used the tin man analogy to explain how I feel in the mornings. I tell my young students that I am part human and part fish and then ask them; “So what am I?” Most of the time they excitedly shout out “Mermaid!” Except for one little boy who looked at me with a confused expression and replied, “A whale?????” Can’t win them all!

  • Annalise Gulstad

    Hi! I have ichthyosis vulgaris and I love this post. I have always liked talking about the bright side of things as well. I have a question, I see that you have a tattoo and I have considered getting one. Did your tattoo stay as bright or has it faded at all? I’m just curious. Looks lovely by the way!

  • Toni Lyn Dufrene

    Thank you for your beautiful words. My “merman” has x-linked ichthyosis. At 7 he’s been very open about his skin, and welcomes his peers to ask questions. We have found the best way to keep people from saying mean/hurtful words is by talking about it, instead of trying to hide it. He’s a typical little guy who loves all things Marvel, and just happens to have scaly skin with a funny name. My hope is that he continues to view his life this way. And because of your words, I know it’s possible!

  • Christine Greene

    I love this! Thank you for sharing!

  • Christen Wirth

    Thank you. My granddaughter is 6 and has ichthyosis.

  • Thank you for sharing this. xoxox

  • Becky Hudson Clark

    You are amazing!! I have LI as well! Thanks for raising awareness! You are beautiful and inspiring!

  • You are a super hero for sharing this and raising awareness, thank you!

  • Sharita Lockard

    Thank you for sharing. I am thankful for people like you who are brave enough to educate the rest of us. I had no idea this existed, but now can make sense of a childhood friend from camp who must have had this. I never asked, but just tried my best to be as kind and treat him the same as everyone. I, as a child, thought maybe he had been in a fire and no longer had smooth skin. Now I realize this might have been dealing with. Thank you again for helping others understand and have an idea of what you have been through. You are an inspiration and a beautiful person!

  • hessiebell

    Thank you for sharing this.

  • Heather Lynn

    What a beautiful post, thank you for sharing this. My daughter has a form of Harlequin Ichthyosis and I wanted to share this for Family and Friends In Support of Ichthyosis #IAM #IchthyosisAwarenessMonth http://facebook.com/groups/friendsofichthyosis

  • Nadine A. Livingston

    Hi! I just wanted to say thank you for saying the things I can’t. I’m 34, also with Lamellar and I often struggle to put my experience into words. So thanks for doing it so eloquently. 🙂

  • thank you for sharing – my rosecea became rather ‘extreme’ in the last few years and I was surprised by how my confidence started to ebb- that quote at the end is really lovely- thank you

  • Bianca

    Thank you for sharing. Your are an amazing lady!

  • Wendi Galligan Abeberry

    I have psoriasis and I hear where you’re coming from. Our bodies are just the container we were given to hold our souls. Look into the eyes to see the person within, give no notice to the packaging. You are a beautiful soul.

  • Wendy Tooze

    I have ichthyosis vulgaris and you have summed up exactly how my life has been and how I feel most days too. Xx

  • Celeste Morris

    Oh, Rochelle. Well done! Well done life. Well done post. Thought you might appreciate this sentiment and shout out! http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/sew-chaotically-melanoma-awareness.html
    Carry on! You rock. #les_chaotically

  • Lynn

    There is nothing harder than having a condition that affects how you look. My sister has psoriasis, she struggles with the same problems — cruel people, pain, itching, dry cracked skin — and the same issues with how she sees herself.

    You are brave for talking about it openly, honestly and without any rancor. You are amazing!

  • Kaysie Berry

    Rochelle this is amazing. Thank you for sharing! You are absolutely gorgeous. My 2 year old has Lameller as well. We just started Tazorac a couple months ago and its just as you described it. I love your tattoo as well!

  • SUCH A GOOD POST! I’d never heard about this skin condition until you started posting about it a few years back. I’m glad you’ve found a way to lessen the skin thickening – I had no idea you were “shedding” so often! Guess it’s proof that internet pictures only tell a part of the story… which is worth remembering when engaging in social media, right? Big hugs and a high five for being awesome!

  • Daniela O’Connell

    One thing is for sure: you are very brave and very beautiful! Thank you for the shoutout and sharing the awareness!

  • Kathy

    Thank you for opening yourself up to us. It is very brave. You are wonderful. Love your sewing.

  • Mayrav Baer

    Thanks for sharing! Those are some really lovely pictures. Those kids at camp are so lucky to have you.

  • Sam

    Brave girl, thank you so much for sharing. Is it a heredity linked condition that can be passed to the next generation?

  • Thank you for letting us know about this!

    You are awesome!

  • Giulia

    You are awesome

  • Jenni Murdison

    Thank you for sharing x I don’t really know how to express my response but thank you x