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ALYCE Paris Designer Claudine Hamm reached out to a few very special teens for their perspective on the challenges life has presented them.
Veronica was diagnosed with Systemic Lupus and Mixed Connective Tissue Disease about three years ago. She has undergone four medical procedures, lost her hair, and seen more specialists than she can count. Veronica states that, “One of the hardest parts of living with these invisible illnesses is the criticism I receive from others. I don't look sick, so it's hard for others to understand that I am. That's why I talk about it as much as I can and I don't let others opinions weigh me down. I hope that by sharing my story I can help other people going through the same struggles.”
In her own words: “When I lost my hair, I was a junior in high school. For two weeks, my hair fell out every day in every class. It was very hard for me to deal with, and my friends couldn't understand what was wrong, so they avoided me. Other kids I didn't know got jealous because I left class early, wore a hat because my scalp was sensitive, and took the elevator every day (mobility problems.) I was constantly picked on. It took me a long time to realize it didn't matter what they said about me.
It was an uphill battle for me to realize that the only way to be truly happy with who you are is to block out what others say about you. You can't count on others for your own happiness. Be who you want to be and let go of those who would rather see you fail.
There are days where I am in so much pain I can hardly move, but I know that I have to keep going. I can't let my illnesses define me. This goes for everything. Don't let anything stop you from reaching your goals.”
Veronica says she “look[s] at life very differently now. When we are in high school, it's easy to get caught up in drama and silly things. When I was diagnosed [with Lupus and MCTD], it forced me to look at my world differently. Suddenly it didn't matter what the latest school drama was, instead I was focused on my latest medical results, or the next time I had to miss school for a doctor’s appointment. I had to be responsible enough to get all of my homework and have it done before the due date because I didn't know when I would miss class again or be too sick to finish it.
We take so much for granted, family, friends, health. My family supports everything I do, from pageants [to] school projects to modeling. Before I got sick, I didn't pay attention to how much my parents did for me and how much they sacrificed to make me happy. My dad took off work … to take me to California for treatment… I have friends that I can count on (some going through similar medical situations) and we support each other.
I learned not to be ashamed of my medical conditions and to accept it as part of who I am. I am proud of how much I have achieved and I am excited to see where my future takes me.”
Veronica loves to model and plans to model full-time in the future. In 2016, after she lost her hair, many people were skeptical about her competing in a natural beauty pageant with a wig. Veronica struggled to walk and was in a lot of pain, but she persevered, “I did not let that stop me from competing and winning 6 state and 2 national titles! I used my illnesses as a platform to raise awareness and I shared my experiences on stage.”
Chloe is an incredibly inspirational 10-year-old girl who has a rare genetic disorder, Primary Ciliary Dyskinesia (PCD), which impairs cilia lining, or “hairs”, in your respiratory tract; resulting impairment can affect your hearing, smell, and lungs.
Chloe learned to journal her thoughts after she was diagnosed with PCD, and fear, doubts, and frustrations saddled her emotional well-being. Her journals led her to pen her first book, PCD Has Nothing On Me, because she couldn’t find a first-hand account written by a kid with PCD, something she could relate to. She felt compelled to write her own story—she hoped that other kids facing similar challenges would be able to relate to her story as well. Even Chloe's mom knew Chloe “would never allow for her medical challenges to define who she is because it’s not who she is!”
Living with PCD has changed Chloe’s perspective on life. In her own words:
“Normal” is what you choose or need it to be.
It truly is important to be kind to everyone you meet because we are all fighting battles unseen and unknown to others.
Never try to fit in. Being different is scary but it will help you stand out once you embrace it as a superpower.
“Daily I am reminded that life is what you make it. As a kid living with PCD I can’t escape my illness but I refuse to be a prisoner to it. I have PCD but PCD doesn’t have me! In all I do I hope to motivate and inspire other girls living with and experiencing their own challenges. Whenever I model, act, do interviews about my life as a kid living with PCD I hope that I am achieving just that. Our challenges don’t define us. We can achieve anything we set our minds to.”
Chloe's ultimate goal is to be a world-renowned model, New York Times best-selling author, actress and fashion designer. She was grateful for the opportunity to model for Alyce because she believes that “Every time I model, I feel so free and empowered.”
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