May 10th is World Lupus Day, an event that aims to create more awareness about systemic lupus erythematosus (SLE), the most common form of lupus. SLE can occur in both men and women but is more common in women. In Hong Kong, SLE mainly affects women of reproductive age. Healthy Matters attended the very first edition of My Lupus Diary event last December and spoke to rheumatologist, Dr. Carrel Yu 余嘉龍醫生, to understand more about a condition that affects nearly 0.1% of the Hong Kong population.
What is SLE?
SLE is a systemic, autoimmune disease that affects multiple tissues and organs in the body. The most common symptoms for SLE include unexplained skin rashes, joint pain/arthritis and mouth ulcers. Other lupus symptoms include extreme fatigue, fever, hair loss, anaemia, and photosensitivity. As you can see, the range of symptoms you can experience with lupus are fairly varied –unsurprisingly, lupus is sometimes called “the great imitator” as it’s often interpreted as something else.
The severity of the disease and symptoms vary per patient. Skin symptoms can range from mild skin rashes that barely need any treatment to severe inflammation that require corticosteroids treatment.
Managing SLE symptoms
Unsurprisingly, SLE can have a huge impact on an individual’s physical, psychological and social well-being and quality of life. Individuals with SLE often experience chronic pain associated with impaired organ function, bone degradation and kidney disease.
According to Dr. Yu, joint pain in SLE is usually not very severe but it reminds us that it can be a manifestation of underlying rheumatic diseases. Certain lupus patients may have significant arthritis, resulting in finger joints pain and swelling. These patients can try paracetamol first as symptomatic control. Pain and stiffness usually improve with mild exercise. If arthritis persists, rheumatologists may consider non-steroidal anti-inflammatory drugs (NSAIDs) or disease modifying agents, like plaquenil.
Autoimmune diseases and rheumatologists
Autoimmune diseases are a broad group of diseases in which a person’s immune system starts attacking their healthy tissue. SLE patients fall under the care of rheumatologists, who generally take care of patients who suffer from autoimmune or immune-mediated diseases.
In Hong Kong, there is a misconception that rheumatologists only take care of joint problems, associated with elderly diseases such as arthritis. In fact, rheumatologists care for a wide range of patients who suffer from issues affecting their joints and soft tissues.
It’s important that if you have unexplained prolonged joint pain and/or unexplained skin rashes, you consult your GP. You can be referred to a rheumatologist in either the public or private system by your GP, if necessary.
Lupus Support – My Lupus Diary
If you are interested in learning more about lupus in Hong Kong, you can join My Lupus Diary. Its founder, Sapphire Shen 沈仲文, says that her community aims at providing an online platform for Lupus patients to share and exchange information and their experiences. They also hope to raise awareness of lupus in Hong Kong by sharing stories and related information through different activities, such as gatherings, photoshoots, media interviews and exhibitions etc.