Life with Alopecia...Jaleigh's story

By NOREEN HYSLOP

Managing Editor

Jaleigh Murphy is like any other eight-year old in the second grade. She loves to sing, cheer, dance and play ball. She loves clothes, especially clothes that sparkle. But unlike most eight-year-olds, Jaleigh's daily wardrobe is not complete until she puts on her wig -- or more often these days, a hat.

Jaleigh has no hair. At two years old, she began to lose her hair in patches, eventually losing it all even her eyebrows and eyelashes.

"Her hair actually began growing back after a short time, and what had been brown grew back snow white," explains her mother, "but it didn't last long. It fell out also, and she has never had any significant regrowth."

Gary and Camie Murphy eventually took their toddler to Mayo Clinic in Rochester, Minn., where it was confirmed Jaleigh had Alopecia Universalis, the most advanced form of a disease that is evidenced by the loss of all body hair. With some types of Alopecia, there is a chance that hair might spontaneously regrow. With the Universalis variety, however, that likelihood is almost non-existent.

Other than the loss of hair, there are only a couple of symptoms that accompany an Alopecia diagnosis. Of most significance is a distortion of the fingernails and toenails. Those symptoms range from pinprick-like indentations to severe distortion of the entire nail. Early on, Jaleigh had some discoloration of the fingernails, but that quickly improved, and that symptom has not returned.

Alopecia patients are generally otherwise healthy. The disorder is caused by a mutation in a gene dubbed HR in a specific chromosome. It is said to be the human version of the gene that is responsible for hairlessness in mice.

Jaleigh has attended Southwest Elementary in Dexter since kindergarten. She has always worn one of her half dozen wigs. The wigs are expensive and often uncomfortably hot in the summer months. It has only been in recent weeks that Jaleigh decided she'd put her wigs aside for now. They can be hot and cumbersome for an eight-year-old. In their place, she's been donning some stylish knit caps. Always fashion conscious, she has a variety of hats to match her colorful wardrobe. With growing self-confidence, sometimes she elects to discard the hats entirely while she's in class.

"Her teachers have been great to explain Alopecia to the other children," Camie Murphy says. "When she entered first grade, I took a video to the school that featured Miss Delaware and an NBA player named Charlie Villaneuva, both of whom have Alopecia. I explained to the class that this is what Jaleigh has, and that's why she usually wears a wig."

Showing that video could not have worked better for Jaleigh and her classmates.

"The kids thought that was pretty cool that she could identify with a beauty queen and a major league basketball player."

Most children, Camie says, are very understanding of Jaleigh's condition and in short order, the lack of hair does not come in to play. The difficulty usually lies with strangers who are not familiar with Jaleigh or with the disorder.

"Most people assume she is a cancer patient," Camie says. "So, I do a lot of explaining."

There is always the child in the classroom or on the playground, Jaleigh's mother admits, who will tease, and those moments are difficult for the little girl who is full of optimism and has a smile for everyone she meets. Jaleigh has learned to ignore those who choose harshness over kindness.

It is her positive attitude and sharp sense of humor that seems to help in dealing with her diagnosis.

"I'll never have head lice, and I'll never have to shave me legs," the energetic eight-year old attests.

Jaleigh sees a specialist in St. Louis regularly for her Alopecia. She is generally healthy, but does tend to contract infections easier than most children, and the reason for this is indirectly related to her condition.

"Jaleigh has no nasal hair or hair follicles in her ears that for the rest of us serve as filters," her mother explains. "And she does have allergies. So, she tends to be more susceptible to germs and infections simply because there's no protection. You'd be surprised what a difference it makes not to have that protection."

It was Jaleigh's St. Louis physician who introduced the Murphys to the National Alopecia Areata Foundation, an informational and support foundation for Alopecia patients and their families.

"We've been to the foundation's camp every year since we were told about it when Jaleigh was about five," says Camie. "It is an absolutely amazing experience."

The summer camp hosted by NAAF is not only for children and is not only for Alopecia patients. Jaleigh and her family have made lifelong friendships at the annual international event, which will take place in St. Louis this year from June 27 through June 30 at the Hyatt Regency by the arch. Over 700 people were in attendance last year.

For those three days each summer, bald heads are the norm. Alopecia patients from infants to seniors spend time sharing their stories, providing helpful hints and generally sharing and caring for each other. Time at camp is chocked full of fun and games, entertainment and fellowship.

"It's so helpful to be with parents of children who also have Alopecia. We don't know anyone else locally who deals with this, so we've made a lot of friends at camp, and Jaleigh looks so forward to seeing the same kids each year. Every year, by the time it's over, we're all crying," Camie says. "No one wants to leave."

In the comfort of her home, Jaleigh is usually found with no wig and no hats -- with her perfectly shaped and very bald head exposed.

Jaleigh finds comfort in a humorous slogan she says she learned at camp. She recalls it with a smile on her face.

"God put hair on people without pretty heads."