Meet Treasure. She's a teen with a passion for music and acting whose confidence is contagious. Treasure was born with a rare skin disorder called lamellar ichthyosis (L.I.). It is genetic and causes dry, scaly skin. It can lead to dehydration (when your body doesn't have enough fluid) and makes it difficult for Treasure to control her body temperature. While Treasure faces some unique challenges, she's never let anything stand in the way of her dreams. See what she has to say about life with L.I. and achieving her goals.
How old are you?
What is it like living with lamellar ichthyosis?
I'd say it's just like living without lamellar ichthyosis. I'm able to experience and accomplish just as much as any other 14-year-old girl. What's different for me, though, is that I have to carry a water bottle with me everywhere I go. This keeps me from overheating. Plus, I get asked lots of personal questions about my skin, which gets tiresome. I don't really feel like explaining what L.I. is in the middle of the produce section at the grocery store.
What is the most challenging part of living with lamellar ichthyosis?
Strangely enough, the most challenging part for me is not that I overheat very easily. For me, it's the way people I don't even know treat me. I can't walk anywhere with my neck, arms, or legs exposed without someone staring. What's worse is when people come up to me to give me advice, as if they are experts on L.I. I understand they are trying to help, but it makes me extremely uncomfortable.
Have you ever felt held back by your condition? If so, how did you overcome these obstacles?
I've never felt held back in the sense that "I have this skin condition and therefore can't reach my goals." However, it is frustrating to look at people who are where I want to be in life and not see anyone who looks like me. There is no one in the media today with L.I that I can look up to. Unfortunately, I think many people with L.I may not have the confidence or support to pursue what they want to do in life. Although this is discouraging, I overcome my self-doubt by seeing this as an opportunity to inspire others with L.I.
What has this experience taught you?
Having L.I. has taught me to always be determined. People have told me I wouldn't be able to do certain things because of L.I. Telling me what my limitations are only makes me work harder to complete my goals.
How do you like to spend your free time?
Music is a huge part of my life. I'm in the choir and band at my school. I play the alto saxophone, violin, acoustic guitar, and I'm working on piano. Along with practicing my instruments, I love discovering new music. I also love to act in live theater at my school and in community theaters.
You've also acted in TV shows! What do you love most about acting?
Acting is great because it allows me to tap into parts of myself that I normally don't get to see. To be someone else while also being a part of an amazing and accepting community is an experience like no other.
Do you have any advice for girls interested in acting?
Just do it! Join an acting group at your school or look into community theater. If you're interested in film, search for opportunities in your area. It's never too late to start, and the more experience you get, the better you can be.
What are your future goals?
I'd love to do some form of theater professionally — if not acting on stage, then playing music for Broadway shows or even writing and directing. Ideally, I want to do all of this in my life. When I get older, I'd even like to compose music for both live theater and film.
What's your advice for other girls who are living with genetic disorders?
Don't take no for an answer. If you want to do something, work hard to achieve that goal. Despite what your teachers, peers, or even parents say, you are just as capable as anyone else on Earth. Don't let the gift you were born with hold you back!
Content last reviewed Monday, October 15, 2018
Page last updated October 15, 2018