Lupus sufferer supports othersIn the medical world, Lupus is “a disease with a thousand faces.” The cause of the autoimmune disease is unknown and therefore there is no fundamental means of treatment. Min Deok-nim, 57, has been suffering from Lupus for 20 years. “For the first 10 years, I didn’t know what caused my problems. I had such a high fever and headaches,” Ms. Min said.
Until 1996, there was nothing she could do to deal with the chronic condition. She visited all kinds of hospitals and tried many treatments. Later she was able to confirm that she had Lupus after special check ups at two major hospitals. Nothing changed despite knowing her disease.
Lupus, or Systemic Lupus Erythematosus, is a chronic, usually life-long and potentially fatal disease. Scientifically, it is characterized by unpredictable exacerbations and remissions with protean clinical manifestations. In layman’s terms, the body attacks its own cells, causing inflammation, pain, and possible organ damage.
Ms. Min has spent an amount that is equal to the value of her house in southern Seoul on medical expenses, though her architect husband and two sons help her through the hardship.
“In 2000, when my facial muscles were paralyzed, I blew up balloons as treatment,” Ms. Min said. “My second child helped me to blow them up and eventually became a balloon designer.”
In 1997, former MBC TV narrator Jung Mi-hong, who is also a Lupus patient, formed an association of Lupus patients. Ms. Min joined the association and has been an active member, realizing that there are more Lupus patients than she thought.
Some people are not aware of their disease, cannot afford medical treatments, or have economic problems or issues of frustration and isolation after long suffering.
Ms. Min began counseling other Lupus patients; once a week, she meets a dozen patients in the association’s office in Unni-dong, Seoul. When other patients need help, she goes out to lend a hand and answers their calls day and night. She has helped more than 10,000 patients during the last seven years. “Sharing angst and encouragement gives us much strength,” Ms. Min said. The association now has 3,000 members and provides education and economic support. Recently, it held a fund raising event at the Grand Hyatt Hotel. “There are 20,000 Lupus patients registered in Korea, but there are more,” Ms. Min said. “I’ll do my best to help them.”
by Wang Hee-soo