Alopecia areata is a very difficult
disease for the patient, as well as the family, said Lisa
Butler, vice president of communications for the National
Alopecia Areata Foundation (NAAF).
However, there are many things Rikki and Juan Bernal of
Oxnard can do for their 4-year-old daughter, Kalista, who
was diagnosed at age 3 with the disease.
Butler first recommends an NAAF support group that meets
in Pasadena.
"There is a great deal of healing that takes place in
learning that you are not alone in your experience as a
patient or a parent," Butler said.
The NAAF also holds an annual conference for those
affected by alopecia areata directly or indirectly, as a
family member, spouse or friend. The 2008 event takes place
Thursday through Sunday in Louisville, Ky.
Attendees feel empowered
The conference offers "workshops, sessions and social
events that leave the attendee feeling at home and
empowered," Butler said.
She also suggests that parents educate their child's
school about the disease.
"NAAF has a school pack which details ways that families
and teachers can work together to educate their daughter's
peers and their parents about alopecia areata," Butler
said, "ranging from a take-home letter written by the
parents to a schoolwide assembly about alopecia
areata."
The spectrum of alopecia areata varies from one spot on
the scalp to many spots to total hair loss, said Kalista's
dermatologist, Donald Seidman of Camarillo, who has a
private practice in Tarzana and also spends one day a week
at the Magnolia Family Medical Clinic in Oxnard, where he
met Kalista.
"It's spontaneous and can happen at any age," Seidman
said. "It's not rare, but it's uncommon. It has no known
cause. We think it's an immune reaction at the hair root
that tells the root to stop functioning."
One treatment involves injecting cortisone into the bald
area to stimulate the hair to grow. However, in the case of
a child like Kalista with total hair loss, such treatment
would require a number of needle injections.
"The success of such injections is very high if you
think you could inject a 4-year-old without traumatizing
her beyond belief," Seidman said. "The cortisone injections
are a very mild dosage and not considered unsafe in any
way, but it can be a traumatic course so a wig is a common
option."
Treatment options vary with the extent of hair loss,
Butler said, and, "generally, the disease is cyclical in
nature, and the hair goes through a period of loss followed
by re-growth."
Many individuals respond to treatment, she said.
"However, there is not a treatment that works
across-the-board for everybody. "
Goal to curb stigma
A lot of the stigma associated with alopecia areata
comes from individuals not knowing what is causing the hair
loss, Butler added.
"The goal is to curb this by letting everyone know
exactly what is going on," she said. "As she gets older,
they can continue to hold awareness events in their
community to keep the education going."
For information, call the National Alopecia Areata
Foundation at 415-472-3780 or go online to http://www.naaf.org. For
information about the NAAF support group in Pasadena, call
group leader Betsy Wilbur at 818-935-9424.
Courtesy Ventura County Star