The Skin I'm In, Touching the Feeling of Freedom

A few days ago I met up with an extremely bright and confident little boy named Isaac who has a skin condition called ARCI-lamellar ichthyosis, and because of Isaac, I’m going to share with you a part of my own story. I’m finally willing to reach out of my comfort zone and share my story to the public – something I’ve never done before. As some of you already know, I was diagnosed with Chanarin-Dorfman syndrome – a combination of neutral lipid storage disease and ichthyosis (in my case ARCI-lamellar ichthyosis) – from birth. It affects me physically and internally, making it hard to break down lipids and fats in my body. My condition is extremely rare, with less than 10 known cases throughout the world. With that being said, you can see how difficult it might be to research and possibly find a cure to improve this condition.

Neutral lipid storage disease affects me internally – my triglycerides are always high. ARCI-lamellar ichthyosis however, has affected me both physically and medically. I was born with dry, scaly skin all over my body. This condition affected me in all sorts of ways – my skin is inconsistent and can change (for worse or for better) based on the weather and/or season, which can lead to my body overheating. There will be days where my skin will be amazing and there will also be not so amazing days. It has been an extremely hard journey and still is – in ways you cannot even imagine. I wake up every morning not knowing what to expect – every minute of any given day, I have to take my comfort into consideration on top of juggling my personal and academic life. My skin is an endless cycle that takes priority in my life.

I used to have extremely thick scales and patches from head to toe. While these have improved over time (through constant care), I still occasionally have discoloration and an appearance of redness on my skin. I always felt and heard the passes made at me, which made me feel like an outsider that just didn’t belong. I asked myself why I couldn’t look “normal” like the other kids? Why did I have patches and scales? Why couldn’t I just be “normal” and accepted? People only saw what I had physically, but didn’t understand the types of struggles I went through.

With time my skin began improving. People who have known me my entire life have seen how I had to take things into my own hands and experiment with different remedies. I struggled a lot – both mentally and physically – and was really giving up on myself, but after high school, I decided to make a 180 and told myself that it’s time to work on myself and understand my body; understand the many changes it goes through and what types of environments are better or worse; and finally, understand that I need to break out of my shell and not restrict myself from doing activities that other kids participated in. I restricted myself a lot because of my skin – whether it was hanging out, playing sports, etc., it was all because I felt insecure. I fought with myself a lot, resenting my skin (a huge part of me), and put myself down because I could pick up on how other people judged me. I thought I couldn’t strive as an individual because I was scared of doing everyday things. The constant itchiness on my skin used to be unbearable and still is at times, but I try not to fight it as much anymore – I’ve learned to make it my friend.

I would constantly go to that dark place and feel like I have lost, but I realized that I had to pick myself up and not lose. And it’s not that I don’t find myself in that dark place sometimes even now, but at least now I realize I have to get on my own two feet, build that strength and acknowledge that I have such a great support system consisting of my family and friends.

As time went on and I learned to become comfortable with myself and I learned to make my skin condition, ichthyosis, my friend. I would not be the person I am today if I didn’t have ichthyosis. I realized that I can make myself happy and feel just as good as any other person by striving to fulfill my dreams and my passions, whether it’s for photography, dancing, etc. I would like to thank my family, friends and accomplished team of doctors and nurses, for constantly being huge pillars in my life and for instilling confidence and having faith in me. I would also like to thank those people who made passes at me; words can be hurtful, but my actions disproved them – I broke all odds only to come out stronger than ever. Of those passes, some of the worst were when people used to say, “I feel bad for you.” Why? Pity is something I never saw as making me feel better. I am not sorry for having Ichthyosis – I am thankful for having it. Something I live by and tell myself is to “make your struggle your strength,” and Ichthyosis has taught me just that. We’ve all heard the quote, “Don’t judge a book by it’s cover,” which can be cliché but is true. Too many times, we are so unaware or uninterested in actually reading the pages of the book – and we do this every single time we make snap judgments. Taking a second to humble yourself, think of the person behind the picture, and understand the words of a book, only takes a little bit of extra effort.

Each day I am growing, becoming a stronger person, and learning to love the skin I’m in. With time I have realized that there is no such thing as normal in this world because the world is full of differences. Living and having Chanarin Dorfman syndrome doesn’t define the person I am, but it is definitely a part of me.  A part that in ways I am thankful for. I am happy to have guided Isaac in ways in which he can improve his skin, and I am thankful for meeting people who live with various types of Ichthyosis and skin disorders, because they are simply beautiful and awesome. I want those kids who have Ichthyosis to realize that with confidence and strength you can conquer anything. This message isn’t just for people who have ichthyosis though – it’s for anyone who has fear or doesn’t feel confidence within themselves. It’s not always going to be easy and you might face these challenges on a daily basis, but in life you have got to keep trying by taking it one step at a time. Open yourself up and make it known that, yes, you can do anything; you have the power to bring that strength to the surface and beat the odds. YOU are your biggest support system. YOU make the change. I step into the world knowing that I have to face my obstacles, but I face them with my head held up high and my faith stronger than ever. You may look at me differently after this post or you may not – it honestly won’t phase me anymore, because I just touched the feeling of freedom.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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