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They have alopecia areata; they're not sick



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Marco and Nico McNeil are both afflicted with varying degrees of alopecia areata. Both attend Oxford High School. Photo by C.J. Carnacchio. (click for larger version)
August 29, 2012 - When you're a teenager, looks are everything.

Teens often judge each other by appearance. Teens can be extremely self-conscious about their own appearance.

That's not an indictment of young people, it's just reality.

When you're a teenager, you want to look normal and you want everyone around you to look normal – whatever 'normal' is. Nobody at that age wants to look different, but sometimes they can't help it.

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That's when it's important to have some knowledge, which hopefully leads to understanding and acceptance.

That's what Oxford resident Marilyn McNeil is trying to accomplish before her sons, Nico and Marco, begin a new year at Oxford High School next week.

Nico, who's a senior, and Marco, who's a freshman, both have a condition known as alopecia areata, a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. The immune system, which is designed to protect the body from viruses and bacteria, mistakenly attacks the hair follicles.

"I think they're fine with it. They've lived with it since they were 3," she said. "I think they're more affected by everyone else's reaction. People stare. They think they have cancer."

But that couldn't be further from the truth. Other than having varying degrees of hair loss, both Nico and Marco are "very healthy" young men, according to Marilyn.

"Some people look at you at first and they assume the worst," Nico said. "Sometimes people ask, not to be mean, but they ask because they're curious . . . I've been asked (about my condition) probably over 100 times at least."?

"It hasn't really affected me at all," Marco said. "The only thing it's affected is my hair. It hasn't really affected my life-style in any way. It only affects what you look like; it doesn't affect your personality or anything."

Alopecia areata affects approximately 2 percent of the population overall, including more than 5 million people in the United States alone, according to the National Alopecia Areata Foundation (NAAF). It's genetic, not contagious.

"It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis)," according to www.naaf.org. "This common skin disease is highly unpredictable and cyclical. Hair can grow back or fall out again at any time, and the disease course is different for each person."

"It's like your body's allergic to your hair," Marilyn said. "That's the best way I can describe it."

Marilyn noted that even though alopecia areata is "most common" in children, people over the age of 30 can get it, too, at any time.

"People think it's a stress thing, but it's not at all," she said. "It has nothing to do with nerves."

The McNeil family first became aware of Nico's condition when he was 3 and got his very first haircut. It was quite short and his parents noticed something unusual.

"Underneath, there was a nickel-shaped bald spot," Marilyn said. "At first, I thought maybe the barber nicked his head."

But that wasn't it and "the barber didn't understand what it was either." They took Nico to the doctor who referred them to a dermatologist.

"I went to about three dermatologists before I found one that knew what it was," Marilyn said. "After about six months, we finally we figured out what it was."

Once they identified it was alopecia areata, the McNeils learned as much about the condition as they could through the NAAF, which offered all kinds of brochures and newsletters.

As they learned more, the McNeils had Nico undergo various treatments, ranging from creams to lasers.

"It would grow back and then it would fall out again," Marilyn said. "We tried many, many, many different treatments. He even got cortisone shots in his head. We did this for years and years.

"Then when he was 9 or 10 (years old), he said, 'I'm done. I'm not doing anymore of this stuff. (His hair is) just kind of patchy right now. He just lives with it."

"I still remember (those shots) and it was not fun," Nico noted.

Marco was also diagnosed with alopecia areata at age 3, although his condition is more severe than Nico's. Marco has alopecia universalis.

"His just started falling out in patches, a lot more aggressively than Nico's," Marilyn said. "By kindergarten, he was 100 percent bald, which was devastating. I think probably more for me than him because at 5 years old, it's not such a big deal. I was a wreck.

"He grew his hair all back by second grade and then by fourth grade it all fell out again. He hasn't really had any hair on his head since. He's also lost eyebrows and eyelashes."

But because the disease is cyclical, he has been growing some hair lately.

"He starting to get some body hair," Marilyn said. "A little bit of his eyebrows are starting to grow back, but no eyelashes."

Marco's also been growing some "slight patches" of hair on his head during the summer. "The Vitamin D from the sun seems to help growth," Marilyn said.

Other than some comments and stares from other kids, the McNeil brothers haven't really experienced any serious bullying or teasing because of their condition.

"They've been very fortunate that nothing physical has happened," Marilyn said. "They've heard some comments – a little bit, but nothing drastic. They get sad about it sometimes and then they shake it off."

"You tend to realize that your real friends look past (your appearance) and they treat you how you're supposed to be treated," Nico said. "Real friends and real down-to-earth people will accept you for who you are. That's the bottom-line. If they can't accept you, that's not somebody you want to hang around with."

"I accept everybody at the high school. There's not a single kid that I am not nice to," he added. "It's hard for me to be mean to somebody because I know how they feel."

Back when the brothers attended Clear Lake Elementary, at the start of every new school year, Marilyn would provide their teachers with some brochures and a DVD about alopecia areata. She'd also visit and talk to the class about it.

"I think that's why they weren't bothered a lot," she said. "Those kids knew what it was, that it's not contagious and that he's not sick."

Nico admitted he had some difficult experiences going through middle school because kids at that age are "a little bit less mature" and they tend to make some comments.

"They tend not to look past ailments," he said. "I never got made fun of a whole lot, but there's always that one or two kids that usually say something."

"If there's not a really annoying person in your group of friends, it's probably you," Marco noted.

That's why he recommended to his mother that she send Marco to private school for sixth through eighth grades. He ended up going to Oak Hollow in Orion Township for the past three years as a result.

Nico's experiences in high school have been much more positive, that's why felt it would be no problem for Marco to once again attend public school.

"When you get to high school, everybody has their own thing – nobody's perfect," he said. "That's when people start realizing just because you're different doesn't mean it's bad."

"I've been going to public school my whole life, so by the time I got to high school everybody already knew me," he added. "Based on my personal experience, I believe they will accept (Marco). Everybody's mature enough when they get to high school that they usually accept everybody."

Nico noted there's usually a student or two in every grade that has alopecia areata.

Marco indicated he's both a little excited and nervous about starting OHS.

"You don't know what to expect," he said.

OHS Principal Todd Dunckley has already told Marilyn that if either of her sons chooses to wear a hat inside the school – which is a violation of the dress code – they will be allowed to do so. There's another student at OHS who has alopecia areata and he's allowed to wear a hat everyday.

Both Nico and Marco have a kind of take-it-or-leave-it attitude towards wearing hats; it's not a necessity.

Interestingly, Nico and Marco have different views about what they would do if a cure or effective treatment for alopecia areata is ever discovered.

"If I know there's an absolute cure, of course I'm going to do it," Nico said. "But I'm not going to get my hopes up. If they don't come up with a cure for it, I wouldn't care. If they did, I'd try it just for the heck of it. If it worked, great. If it didn't, oh well."

"Even if there is a cure, I probably won't take it because I don't need it," Marco said. "It doesn't really make a difference (with regard to who I am)."

CJ Carnacchio is editor for The Oxford Leader. He lives in the Village of Oxford with his wife Connie and daughter Larissa. When he's not busy working on the newspaper, he enjoys cigars/pipes, Martinis/Scotch, hunting and fishing.
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