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Member in the news: Kaitlyn
Learning how to cope
Area teen is living with alopecia -- step by steep
By Jimmy Mincin, Staff Writer, Altoona Mirror, jmincin@altoonamirror.com
When 15-year-old Kaitlyn Kuzio found out she was losing her hair, she tried to be optimistic. But funny looks and persistent jokes from other kids made that increasingly difficult — and eventually impossible.
In February, after several misdiagnoses, Kaitlyn found out she had alopecia areata, a highly unpredictable autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It was an emotional trauma she wasn’t prepared for.
“At first, I tried to be positive, but it was hard because of the kids at school,” she said. “I’d have kids pulling on my bandanna and constantly asking me questions when I told them I didn’t want to talk about it. They started calling me ‘baldy.’ I had one kid ask me every day if he could touch my head because he’s never seen a girl with a real bald head before. It was my first year of high school, and this was how I started it.”
Kaitlyn, a sophomore at Altoona Area High School, started hiding her head under hats and bandanas. After a while, she began to adapt to her look, but her peers didn’t.
“I was treated like an odd creature that my school had never seen before,” she said. “It was tough trying to be a good student, a dedicated dancer, a writer, invloved in the community and a social teenager with so many people shooting me down. I couldn’t even turn to my friends because they stopped talking to me.”
It began in January, when Kaitlyn noticed she was losing substantial amounts of hair. She later found the source was two patches on top of her head. The disease eventually progressed to patches all over her head, legs, arms, and complete loss of her eyebrows and eyelashes.
“I went to school for as long as I could,” she said. “But when I lost my eyelashes and eyebrows, the joking got too bad, and my family recommended I take some time away. The school was willing to help, so they offered me a grant to get a wig and set up a homebound (program), where I could meet my teachers at the public library.”
Alopecia is a common but very challenging and capricious disease that affects approximately 2 percent of the overall population, including more than 5 million people in the United States, according to the National Alopecia Areata Foundation in San Rafael, Calif.
As the disease progresses, the affected hair follicles are mistakenly attacked by a person’s own immune system (white blood cells), resulting in the arrest of the hair growth stage. It usually starts with one or more small, round and smooth bald patches on the scalp and can progress to total scalp hair loss (alopecia aotalis), or complete body hair loss (alopecia universalis).
Doctors initially attributed Kaitlyn’s hair loss to a fungal infection, adult cradle cap, stress and her diet.
“The last thing a doctor wants to tell a teenage girl, is that she’ll be losing her hair on and off for the rest of her life,” she said.
If there was a bright spot in the situation, it was the friendship she developed with 16-year-old Jane Pennington, a junior at Altoona High.
“She was the first person to talk to me,” she said. “She didn’t disrespect me because I looked different. She’s actually become my best friend since this happened.”
Jane, whose mother lost her hair following chemotherapy treatments for breast cancer two years ago, empathized with Kaitlyn’s situation.
“I think she feels I’m her best friend because she feels like I’ve helped her,” she said. “But the truth is, she’s been just as good of a friend to me. She’s showed me so many different ways of looking at life. She’s like a hero to me.”
Kaitlyn said she has nine wigs that she wears depending on where she’s going and what she’s doing.
“I pretty much always wear a wig when I go out,” she said. “But if I’m just going down the street, or to someone’s house, I’ll just wear a hat or bandanna.”
Her mom, Shelli George, 32, said it’s been a tough time for the entire family, but they’re getting through it — one day at a time.
“It was difficult it first. We had to really educate ourselves,” she said. “There’s a lot of cosmetic options out there, but I think she looks beautiful the way she is.”
Knowing other kids were making fun of her daughter was one of the hardest things to accept.
“The teenagers have been the worst,” she said. “But it really didn’t surprise me because appearance is so important to them. But it’s been hard. There are times I want to speak up for her, but I know the only way she’s going to be able to cope with this, is to cope with it on her own.”
Kaitlyn’s step dad, Joey George, 29, said she’s learning to cope.
“She’s starting to get out more now, and we’re really happy about that,” he said. “I think she’s coming to terms with this.”
When Kaitlyn gets angry or sad, Shelli reminds her of something bigger than hair.
“I tell her, ‘You want to be a dancer and an English teacher. I don’t believe hair is a prerequisite of either,’” she said.
In addition to dancing and spending time with her three younger siblings, writing has been an emotional outlet for Kaitlyn. In a recent journal entry she wrote this: “Let my personality, my ambitions, my words and my heart determine who I am — not my hair. For if that were the case, I would be nothing. I wouldn’t be here.”
Area teen is living with alopecia -- step by steep
By Jimmy Mincin, Staff Writer, Altoona Mirror, jmincin@altoonamirror.com
In February, after several misdiagnoses, Kaitlyn found out she had alopecia areata, a highly unpredictable autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It was an emotional trauma she wasn’t prepared for.
“At first, I tried to be positive, but it was hard because of the kids at school,” she said. “I’d have kids pulling on my bandanna and constantly asking me questions when I told them I didn’t want to talk about it. They started calling me ‘baldy.’ I had one kid ask me every day if he could touch my head because he’s never seen a girl with a real bald head before. It was my first year of high school, and this was how I started it.”
Kaitlyn, a sophomore at Altoona Area High School, started hiding her head under hats and bandanas. After a while, she began to adapt to her look, but her peers didn’t.
“I was treated like an odd creature that my school had never seen before,” she said. “It was tough trying to be a good student, a dedicated dancer, a writer, invloved in the community and a social teenager with so many people shooting me down. I couldn’t even turn to my friends because they stopped talking to me.”
It began in January, when Kaitlyn noticed she was losing substantial amounts of hair. She later found the source was two patches on top of her head. The disease eventually progressed to patches all over her head, legs, arms, and complete loss of her eyebrows and eyelashes.
“I went to school for as long as I could,” she said. “But when I lost my eyelashes and eyebrows, the joking got too bad, and my family recommended I take some time away. The school was willing to help, so they offered me a grant to get a wig and set up a homebound (program), where I could meet my teachers at the public library.”
Alopecia is a common but very challenging and capricious disease that affects approximately 2 percent of the overall population, including more than 5 million people in the United States, according to the National Alopecia Areata Foundation in San Rafael, Calif.
As the disease progresses, the affected hair follicles are mistakenly attacked by a person’s own immune system (white blood cells), resulting in the arrest of the hair growth stage. It usually starts with one or more small, round and smooth bald patches on the scalp and can progress to total scalp hair loss (alopecia aotalis), or complete body hair loss (alopecia universalis).
Doctors initially attributed Kaitlyn’s hair loss to a fungal infection, adult cradle cap, stress and her diet.
“The last thing a doctor wants to tell a teenage girl, is that she’ll be losing her hair on and off for the rest of her life,” she said.
“She was the first person to talk to me,” she said. “She didn’t disrespect me because I looked different. She’s actually become my best friend since this happened.”
Jane, whose mother lost her hair following chemotherapy treatments for breast cancer two years ago, empathized with Kaitlyn’s situation.
“I think she feels I’m her best friend because she feels like I’ve helped her,” she said. “But the truth is, she’s been just as good of a friend to me. She’s showed me so many different ways of looking at life. She’s like a hero to me.”
Kaitlyn said she has nine wigs that she wears depending on where she’s going and what she’s doing.
“I pretty much always wear a wig when I go out,” she said. “But if I’m just going down the street, or to someone’s house, I’ll just wear a hat or bandanna.”
Her mom, Shelli George, 32, said it’s been a tough time for the entire family, but they’re getting through it — one day at a time.
“It was difficult it first. We had to really educate ourselves,” she said. “There’s a lot of cosmetic options out there, but I think she looks beautiful the way she is.”
Knowing other kids were making fun of her daughter was one of the hardest things to accept.
“The teenagers have been the worst,” she said. “But it really didn’t surprise me because appearance is so important to them. But it’s been hard. There are times I want to speak up for her, but I know the only way she’s going to be able to cope with this, is to cope with it on her own.”
Kaitlyn’s step dad, Joey George, 29, said she’s learning to cope.
“She’s starting to get out more now, and we’re really happy about that,” he said. “I think she’s coming to terms with this.”
When Kaitlyn gets angry or sad, Shelli reminds her of something bigger than hair.
“I tell her, ‘You want to be a dancer and an English teacher. I don’t believe hair is a prerequisite of either,’” she said.
In addition to dancing and spending time with her three younger siblings, writing has been an emotional outlet for Kaitlyn. In a recent journal entry she wrote this: “Let my personality, my ambitions, my words and my heart determine who I am — not my hair. For if that were the case, I would be nothing. I wouldn’t be here.”
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