Growing Up With Ichthyosis
Growing up is hard. Teens are all trying to figure out who they are, and sometimes it’s hard to accept that. For me, it was much harder at a young age to love who I was and how people saw me. Growing up living with ichthyosis is much different than those who are born without it.
According to First Skin Foundation, “Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin.” There is no cure and the few people in the world who are born with it have to live with the struggles of ichthyosis. Only one person in several tens of thousands is affected by this condition.
When I was in elementary school, my skin condition didn’t bother me too much. I didn’t think about it as I would in middle school. At such a young age, all I was worried about was playing and having fun.
But once middle school came around and looks become important to everyone, I started doubting my skin and thinking about how much I wish I didn’t have my condition. I had a few friends here and there but I never felt like I was wanted because kids were too worried about how I looked. I remember researching if there were any surgeries or anything I could do to change who I was. I kept pushing through until the next level of schooling: high school.
Thankfully high school is when my true friends stood out. They were the people that didn’t care about my differences. I remember starting to become less upset by my ichthyosis. I grew out of wanting to change it. It’s not like I wanted to have it or liked it, but I had accepted the fact that this was the rest of my life. I still got stares from people, but it didn’t bother me as much as it once did.
Now, I wouldn’t change my skin for the world. I see it as a blessing in disguise. They say everyone is different in their own ways and I believe that. However, it’s hard to see people’s differences when they’re on the interior; whereas mine is on the exterior for the world to see.
I hope the world will start to learn to be less judgmental by just a glance because it takes much more than a look to know who someone is and what they have to offer.
Chloe is a junior and this is her first year in journalism. She is also involved in many extracurricular activities such as Art Club, Earth Club, SALT, the Cappies program, the swim team, and track and field. One interesting thing about Chloe is that she has a pet hedgehog named Fitz and loves being a part of Young Life.
Anna is a junior in her first year of journalism. She spends most of her time participating in Art Club, Earth Club, and the swim team. She also enjoys reading, creating art, and writing stories she plans on turning into books one day.
Pamela Baumer • Feb 7, 2021 at 6:41 am
You r a beautiful person, inside and out!!! Working on the inside of yourself will only show the true beauty though out!!!!
Larry Bronnert • Feb 5, 2020 at 11:04 am
You are so brave and beautiful!!
Bryan Ewing • Feb 5, 2020 at 9:25 am
Great article Chloe. I experienced almost the same thing in my life. Especially the part about finding true friends in high school. Because of my ichthyosis I really knew who my real friends were.
Randi Lynch • Feb 5, 2020 at 9:05 am
Chloe that’s the way to embrace life. Life isn’t fair by any means but as soon as we know it, life gets much easier. Love the way you told your story! Keep it up girl!!
Fatima shaikh • Feb 5, 2020 at 3:10 am
Its ver hard to growup with this disorder, whenI was young I never used to participate in any games with other kids. Schooling wes tough with the normal kids bcz parents were not ready to make me to sit in the same class rooms sinces their kids were compalining of me being in th class as they had the fear of my scales a d dark skin
Eliphas • Feb 4, 2020 at 11:19 pm
I hear you. My sister who has ichthyiosis says the same thing.
Tangi Angel • Feb 4, 2020 at 9:44 pm
Chloe, what a great article! I love your fearlessness in being who God made you to be! Confident, sure, fun-loving and a true friend to those around you. Stay true to yourself, it becomes you!
Chris Fields • Feb 4, 2020 at 9:40 pm
Like the apostle Paul, a thorn in the flesh doesn’t define you – you are defined by your heart’s place in the world and the message you pass on! Be proud of who you are. My respect to you and your family!
Bethany Gray • Feb 4, 2020 at 8:26 pm
Good Job Chloe! Keep being you! The world needs you! Thanks for sharing you’re heart!
Crystal • Feb 4, 2020 at 5:25 pm
I love everything about this article!!!
Arlena Lunsford Emery • Feb 4, 2020 at 2:10 pm
Chloe, I am so proud to call you family. You are beautiful inside and out. We all struggle with problems, I, myself have autoimmune diseases and understand the struggles you have gone through. But, I’m proud of you for talking about yours and spreading the word, for others to show kindness and try to be more understanding of others feelings. No matter what the situation would be.
Shellie Kirby • Feb 4, 2020 at 1:44 pm
Chloe you are a beautiful person. So full of life, so very caring with everyone you meet. It would be an honor for anyone to have had cross paths with you. Your strong, and admire that about you. Your going places girl
Love you always ❤️