Eileen U. - Valparaiso, IN - 2019
Pick a point in your life and write about your challenges or successes.
Why blend in when you were born to stand out? The only way one can truly make a difference in the world is to be different from the world. These sayings truly make me a stronger person and a reminder that nothing will let me down. During my childhood, I always thought I was the same as everyone else. As years went by, I started to notice my outer appearance wasn't the same as my classmates or my friends. Younger kids or even adults would say to me, "What happened to your face?" I would try to explain to them what it was and they didn't understand it and this made me feel so uncomfortable and deeply hurt inside. I felt like an outcast and I didn't like who I was. I just wanted it to go away. I always asked God, "Why did this have to happen to me?" Even now, there are times my face would be so dry at school that I would try to avoid eye contact when someone is talking to me. I would always have pieces of my skin on my clothes, on a seat I was sitting in, or even on the desk. I felt disgusted with myself knowing my skin would always fall out like that. However, my family had always supported me and told me that one day God will heal me if I have faith in him. When I went to a catholic retreat back in middle school, there was a session where a priest or anyone from the retreat team would put holy water on each individual's forehead and there were many people who fell down because they were touched by the Holy Spirit. Before the guy made a cross on my forehead with the holy water, he told me that he knew what I was going through and he knew about my skin disease (at that time my skin wasn't that dry or noticeable). I was in shock and tears were running down my face. I fell down and I felt like a whole new person when I woke up. I was indeed touched by the Holy Spirit. Even though I wasn't healed, that was when I started to realize that I am so lucky to have a family, house, food, no life threatening disease, and the ability to walk, talk, hear, see, and much more! This rare disease I have is nothing compared to what a lot of people are facing with right now. I am so blessed to have only a mild form of ichthyosis. There are days my skin would look so clear that it doesn't even look like I have ichthyosis and days it's so dry. Every time my skin looks clear, I would look at the mirror and touch my face and admire the fact on how soft and beautiful my face looks. It would be my number one dream to have my skin stay like that forever! For all those affected with Ichthyosis, our skin disease is truly a blessing in disguise. Even if you are not religious, it will still teach you to be grateful for everything you have and allow you to work on the best version of yourself. As a high school student, I have been working on stepping out of my comfort zone. I have taken on leadership roles by starting an Indian Dance Club and a HOSA club (a club for high school students to compete in various medical events). I am a LEAD mentor and a member of Student Council, Spanish Club, and Key Club. Activities such as volunteering in the community and dancing has helped me through all my tough times. As a career, I have a strong desire to become a Physician Assistant in Dermatology. I want to work with patients with any skin-related problems. Also, I was even a call moderator for one of the FIRST conference calls. Even though I was the youngest one there, it was an amazing experience to be an inspiration for the adults. Currently, I am planning an Indian Dance Clinic for students K-5 in my town where all the proceeds will go to FIRST. I want to do everything I can to raise awareness towards ichthyosis and help all the members in FIRST. In the end, the ability to stay positive, especially when having a rare skin disease, is not easy. There will still be ups and downs. It is only through a support network like FIRST that we can help and understand each other as we continue our journey in life!
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.