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Eighteen years ago, Mutia Wisnu’s dermatologist told her she had psoriasis. Devastated by the diagnosis, she decided to get to know the disease better.

“I read books and searched the Internet. I am lucky that my dermatologist specializes in psoriasis so he knew at once and I got the right medicines from the beginning. Many people have to go through misdiagnoses and wrong treatment that makes matters worse for them,” said Mutia, now 35 and a mother two.

Mutia’s case started with what seemed like a dandruff problem that soon spread to her neck, back, elbow and thighs. But with the right treatment and the support of her family, Mutia was able to live like a normal teenager.

Psoriasis is a noncontagious genetic disease that occurs when faulty signals in the immune system prompt skin cells to regenerate too quickly, causing red, scaly lesions that can crack and bleed. Normally, people’s skin cells reproduce every three to four weeks but with psoriasis, skin regenerates in a matter of days. It most often affects the elbows, knees, scalp and torso but can appear anywhere on the body.

Ten to 30 percent of people with psoriasis also develop psoriatic arthritis, an inflammatory disease which causes pain, stiffness and swelling in joints. Psoriasis can affect anyone at any age and there is no known cure.

Currently, the cause of this disease is unknown but health experts have identified potential triggers for the condition, including smoking, stress, fatigue and alcohol consumption.

The Indonesian Psoriasis Foundation (Yayasan Peduli Psoriasis Indonesia) estimates that 1 to 2 percent of the population have psoriasis, or about 2-6 million people. The real number, however, could be greater due to limited access to medical facilities.

In its most severe form, psoriasis can drastically reduce people’s quality of life and can cause disability and physical deformity.

Mutia said that in many cases people with psoriasis will shut their lives off from other people, fearing discrimination because of their condition.

“We cannot go swimming at public pools — we’re afraid we will be sent away because people think our condition is infectious. In villages, people regard this disease as God’s wrath. The stigma persists and is perpetuated simply because people don’t know about it,” said Mutia, an employee at a public relations agency.

Despite her condition, Mutia believes she is “very lucky” because she knows of people with more serious cases of psoriasis.

“I am grateful for having supportive parents and husband. My husband knew me from when my lesion was just a dot until it developed. He accompanied me throughout the process. I also talked to my children about the disease. Although I am worried that they might also get it, God forbid,” she said.

Founded in 2006, the Indonesian Psoriasis Foundation has 760 members, of which the youngest is a newborn baby and the oldest is 102 years old. A common complaint the foundation receives is from people who are dismissed from their jobs as a result of their condition.

“Other than clinical problems, we have to deal with psychological and social problems. We wonder what we have done wrong to get this disease. People mostly think it’s a curse or from black magic practices,” Mutia said.

In its regular gathering on Sunday, the foundation invited psychologist Dharmayati Utoyo Lubis and sociologist Erna Karim, both from the University of Indonesia, to help build people’s confidence about their conditions.

Senior psychologist Dharmayati said family played a key role in helping people with psoriasis. She said there were three critical times that family must give extra support: when the family member is first diagnosed; when the person receives their first treatment, because of possible side effects and the changing of the skin’s condition; and when the condition goes into remission.

“This disease drastically limits one’s choices in life. It also changes one’s way of life and, in severe cases, it creates dependency on other people. Especially for young patients, family must be there when people with psoriasis lose their self-confidence,” she said.

She urged people with psoriasis to develop their communication skills — then at least they can make themselves heard and people will understand their situation better.

With increased communication, she said, family or caregivers can help loved ones with psoriasis go through their difficult times.

“For caregivers, be it family members or friends, supporting people with psoriasis can also help develop their own personal capacity because the whole process will give them a new meaning to life — a new perspective on people and their unique condition,” Dharmayanti said.

At the same meeting, health sociologist Erna Karim reminded the foundation members that opening up to people about their condition would help psoriasis sufferers because a balanced life as both an individual and a member of wider society — and not letting the condition isolate you — was important.

“In sociology, psoriasis is not a disease. What is defined as a disease, in sociology, is when individuals do not take their roles in their respective communities,” she said.

Sharing their condition with their peers and also with the general public is a clear sign of an attempt towards having a healthy, balanced life, Erna explained.