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.