People with psoriasis get healthier and happier

People with psoriasis get healthier and happier

Leony Aurora, Jakarta

It was already 10 a.m. on Wednesday, and only five people had
arrived to attend a monthly meeting held by the Indonesian
Psoriasis Association (API) held in the Cempaka skin clinic at
Cipto Mangunkusumo General Hospital (RSCM) in Central Jakarta.

"I suppose people are healthier now, so they don't come to the
meetings anymore," said one of the association's executive
chairpersons, Muku Manopo, on Wednesday.

Psoriasis is a genetic skin disease that stays with patients
all their lives, but surfaces only occasionally. When the disease
is triggered, skin cells pile up on the surface of the body over
three to six days, faster than the normal 28 days.

As the body cannot shed the skin cells fast enough, patches of
raised red skin, covered by a flaky white buildup, will be formed
on the skin's surface, usually on the scalp, elbows, legs, or in
extreme cases, all over the body.

Although psoriasis is far from being rare -- between 1 percent
and 3 percent of Indonesia's 215 million population are estimated
to have it -- not many people are familiar with the disease.

To counter this problem, API was established in 2001 and
currently has some 3,000 people with psoriasis as members from
all over the country.

"We want people to know that the disease is not contagious,"
said Muku, adding that people often avoided the patients due to
their appearance.

Psoriasis damages not only the skin, but also the patients
confidence along with it, she said. Stress is seen as one of the
main triggers of the disease.

In its monthly meeting, held every second Wednesday of the
month at 10 a.m. at RSCM, people with psoriasis can share
experiences and gain support from one other. To spice up the
meeting, the group, some 30 members who attend on and off, also
collects Rp 10,000 (US$1.15) from each person every month for an
arisan (a lucky draw in which members who win take the collected
money).

Indeed, there was a warm atmosphere in the small corridor
outside the ultraviolet therapy room. By 11 a.m., 10 people had
gathered, talking about anything, from treatment, to children and
pimples.

"We used to have a psychologist with us," said Maylita
Syafrul, 29, an active member who has been able to control her
psoriasis for one year.

Unfortunately, the psychologist moved to Kalimantan two months
ago, and it is difficult to find a replacement who does not
charge, she said.

Other than the monthly meeting, not much is going on at the
association. In March it had its first symposium in Jakarta,
which was attended by 400 members.

As no monthly fee is imposed on members, funds for activities
have to be gathered from sponsors, mostly producers of their
medicine.

"We are trying to build branches first and get more members,"
said Muku, with Bandung as the nearest target.

In October, the association plans to conduct a two-day
training for members on psoriasis, in the hope that they will
become educators to inform the public about the disease. Some 100
members have registered to take part in the training.