In conjunction with World Lupus Day 2009 and its theme “The Child with Lupus”, Persatuan SLE Malaysia (PSLEM) was featured on television when two of its members – Dr Tang Swee Ping, Paediatric Rhematologist, Hospital Selayang, and Norly Azman, a lupus patient since she was 16 – were interviewed on the popular Malaysia Hari Ini show on Tuesday, 28 April 2009.
On TV for PSLEM and lupus – Norly (in red PSLEM T-shirt) and Dr Tang (centre)
Dr Tang spoke about juvenile SLE on the show. She noted that while the disease commonly occurs in young women between the ages of 25-40 years and is often not diagnosed in children, childhood onset SLE accounts for 15-20% of all SLE patients. She also said that the disease is often more severe and aggressive in children and tends to involve major organs like the kidneys, brain and also the blood system. As with adult SLE, symptoms for juvenile SLE are often general, or what are known as “constitutional” symptoms – these include symptoms like prolonged unexplained fever, loss energy or feeling tired, loss of appetite or loss of weight. Other common symptoms include skin rashes, hair loss, mouth ulcers and also joint or muscle pains. According to Dr Tang, sometimes children or young people may have swelling of the eyes or legs (if the kidney is involved) or even fits (if the brain is involved). This disease needs prompt treatment and if treatment is delayed, there is a potential to cause organ damage and sometimes even death.
Norly shared about her experience with SLE for the past 10 years. She told of how 10 years ago, nobody knew much about SLE so it was difficult for her to explain about the disease except that she had a fever, but it was more than that as she got tired easily, and she could not go out in the sun or get stressed out. When asked how she coped, she said the most important thing “is to know your own body very well, and know the signs of relapse such as fatigue, hair loss and mouth ulcers.” As for the number of pills she has to take everyday for her lupus, “I said I don’t count them but it must be more than 10 pills.”
PSLEM’s activities for World Lupus Day 2009, including the “Colours of Hope” art event and the launch on 10 May 2009, were also highlighted during the show.
The show resulted in numerous calls to PSLEM’s office. While these included “anxiety” calls (people worried about rashes, fever, joint pains, etc.), there were also calls from lupus patients asking about their medications, and those who wanted to join PSLEM and to attend World Lupus Day.
The interview on Malaysia Hari Ini was arranged by About Communication Sdn Bhd, who is providing pro-bono media relations services for PSLEM’s World Lupus Day 2009.