Muninggar Sri Saraswati, The Jakarta Post, Jakarta
Many people here do not realize Lupus is a life-threatening disease. Often, they equate Lupus, an abbreviation of Systemic Lupus E (SLE), with a main character of a popular teenage novel in the 1980s that had the same title.
Others, who have little knowledge of the issue, consider that once someone is declared as living with Lupus (Odapus) they will have to leave their dynamic life behind.
Lupus, a chronic autoimmune disease, affects millions of people worldwide directly and indirectly. Nine out of 10 lupus cases are women, according to studies in the U.S.
Indria Dewayanti is living proof of how mistaken the assumptions about Odapus can be. Her relatives, colleagues and peers know she is an active woman, fond of many sports.
She has climbed a number of mountains in Indonesia from Gede Pangrango and Ceremai in West Java to Semeru in East Java.
The 40-something woman has also succeeded in climbing in the most famous mountain range in the world, the Himalayas in Nepal. She first reached a peak there during an expedition in 1987.
Indri was a member of an Indonesian Women's Team ""Indonesia Mendaki Alpen"", which successfully climbed the highest peaks of five European countries: Zugspitze in Germany, Gross Glockner (Austria), Grand Paradiso (Italia), Monterosa (Switzerland) and Mont Blanc (France).
She has continued to lead her life just as she did before doctors found out about the disease she carried.
""I found out about it about one week before I departed to Nepal with an all-women group to climb in the Himalayas,"" she told The Jakarta Post recently.
The tough woman went ahead with her plan, despite family concerns. It so happened that the expedition was aimed at raising funds for Yayasan Lupus Indonesia (YLI) in connection with World Lupus Day in May.
In fact, she had never thought about the problem until she became involved with the recent climb. Indri had no particular health problems, despite some dark spots on her face. She had visited skin specialists about it, but to no avail.
""I later had a thorough examination with a doctor, who understood Lupus. I was lucky to get accurate information about the disease so I could get correct medication,"" said Indri, who works for an Information Technology company.
Lupus is known as a ""disease with a thousand faces"" due to its symptoms that often mimic common illnesses, making it difficult to diagnose -- whereas early detection, diagnosis and treatment of the disease are important to save lives.
It effects organ systems, skin, joints and internal organs. Lupus can also occur at any age, but the typical age range for someone to get it is 10 to 50.
Indri, who suffers Discoid or cutaneous lupus (limited to the skin), admitted that it would affect the quality of life of a person with Lupus. However, it should not deter them, she said.
""Live a healthy life, eat a proper diet and exercise, follow correct medication as well as have regular consultations with doctors, who know about Lupus,"" Indri said, giving tips for Odapus to maintain their quality of life.
Indri has made some slight adjustments to her normal routine.
""Instead of golfing or jogging under the sun, I prefer doing it in the morning. I also try to prevent stress,"" she said, explaining that ultraviolet light (sun or fluorescent light) may trigger the disease.
Indri, who is now active in spreading correct information about Lupus on the sidelines of her busy life as a senior manager, said that she has been taking non-steroidal, anti-inflammatory drugs.
Medicines to treat Lupus are varied, including steroidal drugs. People living with Lupus are often have to take medicines that are very toxic, which have other side effects in long-term use. However, the treatment differs from one person to another, based on the specific needs of each person.
According to the single woman, family support is the most important thing for Odapus since they often must cope with the side effects of Lupus that can affect family members.
Medical expenses can disrupt a family's financial stability,"" she said, adding that many people living with Lupus in Indonesia come from low-income families.
""On top of that, keep your spirits high. There is nothing to be afraid of Lupus so long as you can control it,"" she asserted.
