Last Wednesday, I attended a media briefing on Walk-A-Payung
2012 organized by Persatuan SLE Malaysia.
While I was waiting the event to start, there was a cute
young kid who was really hyperactive – running and jumping around as if he was
in the wonderland.
About this cute young kid, there’s a story behind on his brave and
strong mother. His mother suffers from Systemic Lupus Erythematosus (SLE) or
lupus for short – a life-long, life-threatening disease that occurs when the
body’s immune system turns against its own healthy tissues for unknown reasons.
That young cute kid is her third pregnancy. She had miscarriage
for twice. Third one was a successful one and she is now pregnant with the
fourth one. In life, we easily give up on the things we pursue in life. But
this mother, she is strong, sickness is not a barrier to stop whatever she
believes in. Through her perseverance and strength, now she has a happy family
of three and plus one soon.
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| 50% suffering from the classic malar rash (or butterfly rash) |
More than five million people worldwide battle lupus daily,
of which 90% are females. In Malaysia it is estimated that 43 in every 100,000
suffer from this disease, or more than 12,000 people, with the youngest
recorded aged only four years of age.
For its lupus awareness campaign in conjunction with World Lupus Day this year, Persatuan SLE Malaysia (PSLEM), a non-profit support group started by doctors and patients to help people suffering from lupus, will be holding its annual umbrella walkthon, Walk-a-Payung, to raise funds and to raise awareness on the disease. Greater awareness on SLE will enable an earlier diagnosis and a better prognosis for the patient.
PSLEM provides free counseling services to patients and family members at their lupus information and counseling centres in Petaling Jaya and Georgetown, at SLE clinics in major public hospitals, and via their 12-hour SLE Helpline (9.00am to 9.00pm). PSLEM has also started to provide much needed financial assistance to needy patients undergoing joint replacement and cataract operations -- problems faced due to the side-effects of their steroid medications.
Walk-a-Payung 2012 is jointly organised by PSLEM, Majlis Bandaraya Petaling Jaya, and Friends of Kota Damansara, with Tropicana Medical Centre as the venue sponsor. The event will be held in the grounds of Tropicana Medical Centre in Kota Damansara on Sunday, May 20, from 7.00am to 12.00noon, where lupus patients, family members and supporters, will walk with umbrellas to highlight that exposure to sunlight can trigger SLE in those who are genetically predisposed to it.
PSLEM President Assoc Prof Dr Esha Das Gupta explained that while lupus is generally known as a condition that affects young women of child-bearing age, lupus can also affect children and men as well.
Lupus often goes unrecognized because its primary symptoms – joint pain, fatigue, skin rashes, and fever – mimic many common illnesses, which can cause people and children to receive treatment for conditions they may not have.
“Diagnosing a person with lupus is difficult, even for doctors, as the signs and symptoms are so broad and the complications are far-ranging. PSLEM’s objective is to raise awareness among the public and the medical community on the signs and symptoms of the disease because early diagnosis and treatment leads to a better prognosis for the patient, and therefore a better survival rate,” Assoc Prof Dr Esha explained.
“After the diagnosis, the first step for every patient is to understand what the disease is about and to learn how to take care of themselves. We also encourage lupus patients to join our support group so that they can learn from other patients. We have started a “Share & Care” group that meets monthly at our centre in Petaling Jaya where patients share their experiences and support one another,” Assoc Prof Dr Esha said.
For its lupus awareness campaign in conjunction with World Lupus Day this year, Persatuan SLE Malaysia (PSLEM), a non-profit support group started by doctors and patients to help people suffering from lupus, will be holding its annual umbrella walkthon, Walk-a-Payung, to raise funds and to raise awareness on the disease. Greater awareness on SLE will enable an earlier diagnosis and a better prognosis for the patient.
PSLEM provides free counseling services to patients and family members at their lupus information and counseling centres in Petaling Jaya and Georgetown, at SLE clinics in major public hospitals, and via their 12-hour SLE Helpline (9.00am to 9.00pm). PSLEM has also started to provide much needed financial assistance to needy patients undergoing joint replacement and cataract operations -- problems faced due to the side-effects of their steroid medications.
Walk-a-Payung 2012 is jointly organised by PSLEM, Majlis Bandaraya Petaling Jaya, and Friends of Kota Damansara, with Tropicana Medical Centre as the venue sponsor. The event will be held in the grounds of Tropicana Medical Centre in Kota Damansara on Sunday, May 20, from 7.00am to 12.00noon, where lupus patients, family members and supporters, will walk with umbrellas to highlight that exposure to sunlight can trigger SLE in those who are genetically predisposed to it.
PSLEM President Assoc Prof Dr Esha Das Gupta explained that while lupus is generally known as a condition that affects young women of child-bearing age, lupus can also affect children and men as well.
Lupus often goes unrecognized because its primary symptoms – joint pain, fatigue, skin rashes, and fever – mimic many common illnesses, which can cause people and children to receive treatment for conditions they may not have.
“Diagnosing a person with lupus is difficult, even for doctors, as the signs and symptoms are so broad and the complications are far-ranging. PSLEM’s objective is to raise awareness among the public and the medical community on the signs and symptoms of the disease because early diagnosis and treatment leads to a better prognosis for the patient, and therefore a better survival rate,” Assoc Prof Dr Esha explained.
“After the diagnosis, the first step for every patient is to understand what the disease is about and to learn how to take care of themselves. We also encourage lupus patients to join our support group so that they can learn from other patients. We have started a “Share & Care” group that meets monthly at our centre in Petaling Jaya where patients share their experiences and support one another,” Assoc Prof Dr Esha said.
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| Walk A Payung 2011 - Participants walked under the umbrella to show solidarity to lupus patients in which direct sunlight will compounding their sickness |
“Presently, there is no known cure for lupus. The medications used to control lupus depend on the severity of the disease. These medications have side-effects that could affect the patient physically, emotionally and psychologically, and that’s why counseling plays an important role in improving the patient’s compliance with treatment.
“PSLEM needs to educate not just the patient but also the people that they interact with – their spouses, other family members, friends, employees, even schoolmates. The people around them need to understand the challenges and needs of people with lupus,” she explained.
Walk-a-Payung Organising Chairman Ooi Chooi Im said that the event is aimed at raising public awareness of the disease but also emphasised that there is an urgent need to raise funds for the society’s work in supporting lupus patients. The society is targeting to raise RM100,000 through the Walk-a-Payung.
Ooi urged members of the public to support the society’s efforts by getting a Walk-a-Payung donation card to collect a minimum of RM50 or make a direct donation of RM50 to PSLEM and join the walk. Online payment and registration is also available at PSLEM’s website, www.lupus.org. Corporations that donate a minimum of RM1,000 will be invited to send their company team to walk with their corporate colors and banner. Well-wishers can also get booths at a charity food and fun fair held on the same day to sell items to raise funds for PSLEM’s fund for needy patients.
“The message we wish to convey to lupus patients is that there is hope for them. We all cope better with a support group to turn to. I have learnt much about SLE, about taking care of myself, and about coping with the side-effects of my medications after joining PSLEM,” said Walk-a-Payung Committee Member Chee Siew Lian, who has lived with lupus for more than 24 years.
For enquiries or to get a Walk-a-Payung card, please contact PSLEM at 03-7957 7672, email pslemhq@gmail.com, visit the association’s website at www.lupusmalaysia.org or drop by their office at 3rd Floor, Bangunan Sultan Salahuddin Abdul Aziz Shah, No 16, Jalan Utara, 46200 Petaling Jaya, Selangor.
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