Pick a point in your life and write about your challenges or successes. Theatre and acting have always been a very important part of my life. I've been acting since the 4th grade and it continues to bring me joy. However, growing up with ARCI-lamellar ichthyosis has presented challenges. The stares and inappropriate questions from castmates caused my confidence to drop severely. I felt like an outsider. I was even told at one point by a casting agent that I'd never book a role because of my skin. Despite those deterrents I continued to do what I love. I kept acting, booking roles, and even getting scholarships for my acting ability. I'm very glad I never let other people's negativity, or my own, stop me from doing what makes me happy. 

How has FIRST impacted your life? FIRST has a very special place in my heart. This organization has created a community of people that understand what I have been through, and continue to go through on a daily basis. It's so amazing to be around people who truly get what living with a genetic skin disorder means. 

What's Your Story? We'd Love to Hear It!

 

 

 

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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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