Archive for Thursday, November 16, 2006

Support therapy for stares

November 16, 2006

Eudora West Elementary School fifth-grader Matthew Jones won't be alone in his condition anymore. Neither will his mother, Paula. Both have endured the strange looks stemming from Matthew's alopecia areata ---- a medical condition causing Matthew to lose his hair ---- for too long.

That's why Paula worked to create Kansas' first support group for people suffering from the same condition. The group will meet 4 to 6 p.m. Saturday at the Eudora City Hall, 4 East 7th St.

"I wanted my son to know he wasn't alone, and I wanted others to know they weren't alone," Jones said.

Alopecia areata occurs when a person's immune system attacks hair follicles as if they were unhealthy tissue. It causes those with the condition to lose patches or possibly all of their hair.

The Jones learned of Matthew's condition when he was 8.

Matthew sat down to trim his then comparatively longish hair for picture day, Paula said.

"My husband was just going to give him a buzz, and we noticed patches behind his ears and patches back behind that were bald," Jones said. "I knew right away what it was."

To be sure, Matthew visited a pediatrician where his condition was confirmed.

Paula took Matthew to a dermatologist who prescribed oral steroids to help treat the problem. Eventually, Matthew discontinued the treatment, unsure if it had any effect.

"The side effects were not worth the treatment, which may or may not work," Paula said.

At the time Matthew still had patches of hair. Eventually, even the patches disappeared. Last year, Matthew lost his eyebrows.

People -- adults and children -- stared constantly, Paula said.

Matthew learned to put up with the stares and the comments aimed toward him because of his baldness.

"My dad tells me to say something back when they say something to me," Matthew said.

Paula knew other people shared Matthew's condition. She did research and contacted the National Alopecia Areata Foundation to see if there was a support group for her and Matthew in the state. She found nothing.

With more than 400 people with the condition in Kansas and Missouri, Paula worked to change the situation.

She approached the Eudora City Council Oct. 23, where she gained permission to use City Hall. Since then it's been a matter of waiting.

"I think I was just impatient and I wanted to get this started," Paula said. "I've been very thankful for the city council for letting us have the meeting room."

Paula plans the first meeting to be low-key.

"This first meeting is going to be very informal, and we'll just talk to everyone and let them figure out what they want out of the support group," Paula said. "Some of them are driving from quite a ways away. I want their time to be worthwhile if they're driving to Eudora for this."

With the date set, Paula has already had people RSVP, she said.

"I've had several calls from people throughout the state who said they are coming and a couple from the Missouri side as well," Paula said.

For Matthew, the event will mean a chance to connect with people without the stares.

"If I meet new kids, I'm probably excited for it," he said.

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