By Rafaela Kuznec
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Videographer / director: Adam Gray
Producer: Rafaela Kuznec, Ruby Coote
Editor: Sonia Estal
Kylie Clowney, who resides in Pottstown, Pennsylvania, developed alopecia areata when she was just two years old.
At first, the bald patches appeared on her scalp and over the years the disease progressed causing Kylie’s hair, eyelashes and eyebrows to fall out.
There is no cure for alopecia areata and it affects more than 6.8 million people in the U.S. alone.
The 23-year-old told Barcroft TV: “I’ve never worn a wig just because I wasn’t attached to my hair and I was always confident about my look.
“I felt more insecure with a wig than without it.
“I felt sillier wearing a wig, I felt more self-conscious and I had to worry: ‘Is it styled, is it falling off, does it look right?’”
Her mum, Jamie M. Snellman, remembers the time when Kylie was first diagnosed with alopecia.
She told Barcroft TV: “Her hairs were thinning and then I noticed the weird combination of her nails growing off, they fell off and there were other nails underneath. That’s when I took her to the dermatologist who diagnosed her with alopecia.”
After the diagnosis, Kylie’s family took her to the pediatric dermatologist who referred them to the National Alopecia Areata Foundation.
The foundation provided all the necessary information about Kylie’s condition and the family got the expert support they previously lacked from the doctors.
Since a very young age, Kylie knew she was going to look different to most of her friends.
Kylie said: “Sometimes I wish I had long blond hair but I would never change it for a second.
“I think the whole journey has made me exactly who I am and made me confident.
“I don’t think that I would have had this confidence if it wasn’t for alopecia.”
Kylie works as a florist and volunteers for the National Alopecia Areata Foundation where she is a youth mentor and a spokesperson.
She said everyday at work she is asked about her condition.
She said: “Living with alopecia isn’t necessarily hard but it is a little bit exhausting.
“Everybody has a comment or a question or wants to know why you don’t have hair, which is fine and I love to educate people, that is what I pride myself in doing.”
The support that Kylie had from her family and friends throughout her life has helped her to remain positive.
She said: “I have always had an army behind me that was here to fight with me.”
Kylie’s friend, Shannon Butler, told Barcroft TV: “Kylie is definitely one of the strongest people I know and she inspires me every day.”
He mother, Jamie says that Kylie always had a positive attitude.
She said: “We always say Kylie Smiley. She’s like a ray of sunshine.
“She’s always a social butterfly even as a baby, and alopecia didn’t change her at all.”
Kylie said: “I think I have definitely pushed beauty standards and you know, it is definitely hard being a little bit different but I am confident in myself and confident in what I am doing.”
She added: “I would never trade alopecia for anything.
“It is one of my many things about me.
“It has made me who I am and it has opened the door to so many things, so actually to me, it is a strength, not a weakness.”
Kylie hopes to inspire more women with alopecia and hair loss conditions to start their own journey to self-love and be confident no matter what.
She said: “Everyone matters, we all should have a voice and we all are beautiful in our own way.”