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Crazy CAP Day fights alopecia
(by Sue Hoffman - October 19, 2011)
Crazy CAP Day fights alopecia
By SUE HOFFMAN
Students at Orchard Middle School and Solon Middle School aren't ordinarily permitted to wear hats in school, but for one day this week, hats were not only allowed but encouraged.
Crazy CAP Day, celebrated Tuesday at Orchard School and scheduled Friday at the middle school, raises awareness and funds for the Children's Alopecia Project and National Alopecia Areata Foundation. Each student wearing a hat is asked to contribute $1, and the funds raised will be divided equally between the two organizations.
Two Solon students who have alopecia areata, eighth-grader Aaron Friedman at the middle school and fifth-grader Jeremy Grubb at Orchard, spearheaded the event with the help of their parents and school guidance counselors. The fundraisers are the "Make a Difference Day" projects at the schools.
"I'm excited that we're raising money for alopecia awareness and research," Aaron said.
Alopecia aereata is an incurable autoimmune disease, in which the immune system, which protects the body from such foreign invaders as bacteria and viruses, mistakenly attacks hair follicles and causes hair loss. Approximately 4 million to 5 million Americans of both genders have the condition.
CAP's mission is to support children with alopecia and build their self-esteem, while NAAF funds research to find a cure or acceptable treatment for people of all ages. Both organizations also provide public education on the condition.
Make a Difference Day has always stressed the need to give back, as well as raise social awareness, middle school guidance counselor Suzette Firehammer said. This year's project ties in perfectly with that, she said.
Aaron's condition became evident in May 2010 ironically while supporting a friend who was bald from cancer treatment.
"Aaron was preparing for his bar mitzvah project, which was to support his friend," his mother, Stacy, said. As part of that project, Aaron first dyed his hair yellow to raise awareness and then had his head shaved to be in solidarity with his friend.
"When it grew in, we noticed bald spots," Mrs. Friedman said. "We took him to a dermatologist in October 2010, and he said it was alopecia." By May 2011, Aaron had lost almost all his hair.
Mrs. Friedman said the fact that Aaron had dyed and shaved his head was coincidental.
"He still has some hair regrowth, but it's still evident he has alopecia. There is no cure and no really acceptable treatment. It's not life threatening, but it is life-altering."
Jeremy's condition came on more suddenly.
His mother, Lisa Green, said for Jeremy, alopecia was first evident last Thanksgiving. She noticed his hair was falling out during the drive home from her brother's house in Kentucky. "By Monday, he had lost 60 percent of his hair. I had never heard of alopecia," she said.
A biopsy showed he had the condition. "He lost most of his hair over six weeks," she said.
Both mothers confirmed there's no real solution.
Dr. Green, who has a doctorate in psychology said, "Topical treatments didn't do anything." Then Jeremy took steroid medication. His hair grew, she said, "but you can't keep a child on steroids for alopecia."
After he got off the medication, all of his hair fell out by last June. "Now he's lost his hair on his head, eyelashes and eyebrows."
Aaron has tried several treatments. "Some have been hard and painful," Mrs. Friedman said. One of the treatments involved steroid injections into the scalp. "We stopped in the middle of the treatment. It wasn't worth it.
"It's hard," Mrs. Friedman said, "but we're blessed because no one has picked on him. If someone says 'You're bald,' he says, 'Really?'"
With lots of friends and activities that include sports and jazz band, Aaron said he's OK with it and only wears a hat to protect himself from the cold weather or sun.
"Jeremy wears his hat 24-7," Dr. Green said. An avid soccer player, he has a special skull cap to wear during the games.
For people with hair, it's hard to imagine, Mrs. Friedman said. "What if you woke up and were missing a 5-inch patch of hair? Hair's an important part of your confidence."
Mrs. Friedman and Dr. Green are starting a support group for children with alopecia. For more information, call Mrs. Friedman at 440-759-7689.
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