Nine-year-old Katelyn Doyle of Wheaton cannot recall the days when her mother, Jinx, used to brush her thick, chestnut brown hair.
But today, the experience of feeling a comb through her fine tresses is one she enjoys. ”It feels great,” said Katelyn. ”Now I can comb my hair.” It was just this summer that Katelyn began to see regrowth of hair, thanks to daily application of a steroid cream.
She began losing it when she was just 26 months old; within four months, her hair had completely disappeared.
Her mother and father recall the exact day they noticed the first hair loss: April 17, 1984.
”There were two spots, one on the top and the other on the back of her head,” said Jinx Doyle. ”They were the size of quarters.”
Doctors assured Katelyn`s parents that the hair loss was only temporary, the result of a recent virus.
A month later, when her younger brother Digger grabbed her hair while the two were playing, Katelyn didn`t feel it.
A visit to a dermatologist revealed the actual problem-Katelyn had alopecia areata, a condition that results in hair loss.
It was this experience that led the Doyles, as they looked for information and support for themselves, to form a support group especially for children who have this condition and their families.
One such family faced with the issue of alopecia areata is Gaye Lang of Des Plaines. Her 11-year-old son, Sam Sullivan, lost his hair four years ago. Lang, who began calling Jinx after Sam was first diagnosed, said that the Doyles are very knowledgeable about the current treatments for alopecia.
Dr. Virginia Fiedler, who treats Katelyn and about 100 other children for this disorder at the Department of Dermatology at the University of Illinois at Chicago, said that alopecia areata is thought to be an auto-immune disorder. Hair follicles are attacked by white blood cells, causing the follicles to shrink and the hair to fall out.
It affects females as frequently as males, can strike at any age, and does not distinguish among race or ethnic background. Sometimes someone who is affected can experience total regrowth without any medical treatment. After hair comes back, however, it can fall out again.
While hair loss is sometimes limited to some spots on the scalp, it can also spread to the entire scalp. It can also involve other sites of hair growth on the body, including beards in men, and in other cases entire hair growth on the body, including that along arms and legs, is involved.
While alopecia areata results in the head losing insulation from heat and cold, and in loss of protection of eyes from dust and dirt, the major problems faced by those with alopecia areata are emotional ones.
Katelyn, like other young alopecia areata victims, has been subjected to name calling at times, as well as misunderstanding. ”People at school sometimes call me names,” she said. ”Now that my hair is coming in people don`t tease me.”
”Before Katelyn got a wig, we would be out shopping and people would stop to offer sympathy, thinking she had cancer,” said Jinx.
Katelyn says she realized most strongly this September how different her lack of hair made her from other children. ”I was waiting for my new wig, and I had to wear a hat to school because my hair hadn`t come in enough yet. That`s when I really felt it,” she said.
”At times it`s hard for Katelyn to understand that this is just hair loss and nothing more,” said her dad, Jim Doyle. ”She knows what she has, but we recently saw an acquaintance who has lost all her hair through chemotherapy. She has lost all her hair and wears a wig,” he said. ”Although Katelyn knows this is different, for a 9-year-old it is still difficult and it is normal for her to occasionally question-am I really okay?”
When Katelyn was diagnosed, the Doyles began looking for help and for answers. They discovered some alopecia areata support groups, but all the members were adults who had the condition.
”It was not unusual to go to a meeting and listen to people talk about the horrors of growing up in the `50s and `60s with this condition,” said Jinx. ”It was not very encouraging.”
Although 2 million people in the United States have alopecia, the Doyles initially knew of no other children with the disorder. There was no one for Katelyn to identify with, nor was there the necessary support they were looking for as parents.
”When a child develops alopecia areata,” said Vicki Kalabokes, executive director of the National Alopecia Areata Foundation, which provides information to those with the condition as well as raises money for research, ”the people it is hardest on are the parents.
”Often parents feel guilty about it,” she said, ”and that makes it harder on the children.”
Dr. Fiedler said it is important for parents to realize that they did not cause this condition.
”Very often parents are first told that the hair loss is caused by stress,” she said. ”The parents burden themselves with thoughts of `what did I do to cause this stress in my child?`
”It is important that they get all the information that they can,” she said.
Fiedler also said that it is important for parents to treat these children just as they do their other children.
Another problem the Doyles faced was finding a suitable wig for Katelyn.
”You can`t find ready-made wigs that fit children`s heads,” said Jinx.
”In addition, children`s heads are not fully grown, so (the wigs) have to be replaced.”
Eventually the Doyles found a supplier, and Katelyn was fitted with a custom-made, human hair wig made on a fiberglass base. The cost for a brand-new wig is steep-$3,000. As Katelyn`s head grows and a larger base is needed, the hair is removed from the old base and used on the larger base, with new hair added. This costs $2,500.
The Doyles have been fortunate. Their insurance has picked up some of the cost, but they point out that many insurers will not cover hair prosthesis. They originally had to fight for coverage.
The Doyles, believing that they could be of help to others in similar circumstances, and also looking for a supportive network for themselves, began their own alopecia support group, which meets in their Wheaton home.
”We try to get together on a Sunday during the month,” said Jinx. ”It gives the children an opportunity to meet with other children who have alopecia, and it gives the parents a chance to share information and experiences.”
Jinx said that most children arrive wearing either their wigs or caps, but when they go off away from the adults and are comfortable with each other they sometimes remove head coverings.
So far, their meetings have not attracted large numbers of people, with four or five families usually attending. But word about the group is growing, and calls to the Doyle home from people looking for information continue to increase.
”Some people don`t feel they need to come to a meeting yet,” said Jinx. ”Some just want information. But we want to reach out to as many families as we can.”
The support and information the Doyles provide for other families facing the same issues struck a responsive chord with Des Plaines` Gaye Lang.
”I try to treat it as a problem in the manner that a big nose is a problem,” said Lang.
Lang`s son Sam normally wears a cap. Like Katelyn, he tried a steroid cream this summer, but unlike Katelyn, all the new hair growth fell out.
Sam said he does not volunteer information about his condition. ”If someone asks me if I have cancer, I say no,” he said. ”I don`t tell them anything else unless they continue to ask questions.”
While Sam did endure early teasing, he said that now kids tend not to make fun of him and accept him.
Lang admitted that it hurts to have to see her son go through this, and she said it has had an impact on other family members. Her son Tony, who is two years younger than Sam, was losing some of the hair on his legs because of chafing socks and shoes.
Convinced that he had alopecia areata, he would lock himself in the bathroom and pull on the hair on his head, convinced that this, too, would fall out. He did temporarily lose some hair, not because of alopecia, but because he pulled so hard.
The problems faced by boys who have alopecia areata are a little different than those faced by girls. Girls more easily adapt to wigs, said Kalabokes of the national foundation, while boys usually opt for caps to cover their heads.
This sometimes creates problems for boys at school. The National Alopecia Areata Foundation had to assist a family in one instance, she said, because a school was threatening to expel their son because the wearing of caps was against school policy.
This policy has been adopted in many schools because of the gang symbolism associated with the wearing of caps.
In another instance a principal instructed a boy to remove his cap to show respect. Fortunately, someone stepped in.
There is no cure for alopecia areata, but treatments continue to improve. ”Many children we can help with simple approaches,” said Fiedler.
In addition to steroids, topical minoxidil is sometimes successful, as are hair transplants and cyclosporene. Some patients, however, do not respond to any treatment.
Both Katelyn and her parents are happy with her regrowth, though her hair is still thin. She still wears her wig to and from school, but places it on a shelf when she gets to school.
”Jinx and I are a little afraid of combing her hair,” said Jim. ”We are afraid it will come out.”
He also said that as Katelyn continues to get more hair, the amount of steroid cream required increases because it is not as easy to cover the scalp. In order to maintain hair growth, Katelyn will have to continue using the steroid cream every day.
And the Doyles continue to wonder what lies ahead when it comes time for Katelyn to date.
They believe, however, that through their support group and network, and medical treatment, they can go forward, and they hope to help others along the way.
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For more information about the Doyles` group, contact Jinx Doyle at 708-682-8685.
