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[Lupus & KCR 2023] Lupus patient shares her journey

Prioritizing patient needs, experience key to advancing treatment

By Kim Hoo-ran

Published : May 19, 2023 - 09:39

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At 23, Kim Jin-hye was diagnosed with lupus three days after she was brought to a hospital in an ambulance.

“I was bleeding heavily from everywhere, even my ears,” she said in an interview with The Korea Herald on Monday.

The very quick diagnosis is very unusual. Most lupus patients often suffer years of complex symptoms -- ranging from fatigue, rashes and joint pain to organ failure -- before they find out what has been ailing them.

When Kim told the doctor that her younger sister had been diagnosed with lupus some three years earlier, she was immediately tested. It had taken her younger sister about five years to get a name for her disease, after seeing numerous doctors for equally numerous symptoms, by which time her kidneys had been badly damaged.

“Things have improved greatly now,” said Kim, who heads the Korean Lupus Support Group, also known as Luisa. With greater awareness of the disease among both medical professionals and the general public, the median time of diagnosis following the onset of symptoms is about two years, according to a study a few years ago.

Kim’s experience since her diagnosis 25 years ago has been one of flare-ups and remissions. Kim had had periods when her condition deteriorated greatly and her kidneys were damaged.

Indeed, 2 in 3 lupus patients have kidney involvement within 10 years of the disease's onset. At the moment, she is in the process of gradually reducing her steroid dosage, while continuing with immunosuppressants.

Kim continued in her regular job for a few more years until a worsening skin condition led her to take a break. That was when she started working at Luisa, doing administrative work and offering counseling to newly diagnosed patients who were eager for information.

“There are some 18,000 Lupus patients (in Korea), according to the Ministry of Food and Drug Safety, and Luisa has some 10,500 members,” Kim said. While about 2,000 are active members, about 3,000 receive its magazine.

Established in 1999, Luisa works to inform patients, their family and the public about the autoimmune disease that is especially prevalent among women of childbearing age.

The group’s foremost activity is sharing of information on the disease, with patients and with the public, through leaflets, magazines and annual seminars.

There are 14 regional groupings centered around university hospitals and in Seoul, Luisa maintains an office near Suseo Station, a convenient location for patients who come to Seoul using high-speed trains to visit major hospitals in the capital.

“It is very important to manage the condition,” Kim said. “It is important to know your own cycle of disease activity,” she said.

Lupus 2023 has several sessions that promote the importance of approaching lupus from the patient’s perspective and enhancing patient participation. The meeting also aims to advance medicine that prioritizes the needs and experiences of patients.

In a patient session Friday, Kim will introduce Luisa and share her experience of living with lupus. Also in the session, Dr. Bang So-young of Hanyang University will discuss disease activity measures and treatment goals while Dr. Suh Chang-hee of Ajou University will talk about new treatment strategies. Dr. Park Seong-hoon of Daegu Catholic University, meanwhile, will introduce strategies for coping with lupus and share a video message from Korean lupus specialists.

Dr. Shim Seung-cheol of Chungnam National University, who is also the president of the Korean Society of Systemic Lupus Erythematosus Research (KSSR), will speak at the session to emphasize that raising awareness of lupus is key to timely diagnosis and better outcomes.

Dr. Laniyati Hamijoyo of Padjadjaran University in Indonesia will introduce the patient empowerment project of the Asia-Pacific League of Associations for Rheumatology (APLAR) at the session, and share a video that was produced by APLAR member countries to commemorate World Lupus Day on May 10.

With the goal of raising lupus awareness, the patient session will be broadcast live on YouTube.

Other presentations at Lupus 2023 related to the patient-centered perspective of the disease include a lecture by Dr. Lai Shan Tam of Hong Kong University that emphasizes the importance of looking at lupus through the patients’ eyes. There is also a panel session that discusses strategies to increase health care providers' ability to educate patients with the goal of improving outcomes.