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Lupus patient shares her 25-year experience with disease
Published on: Tuesday, June 25, 2019
By: Sherell Jeffrey

KOTA KINABALU: For the past 25 years, Jean Chan, has been living with a disease with a thousand faces or systemic lupus erythematosus (SLE or lupus), which can mimic so many other diseases.

It has and still is a challenging life journey for Chan who attributed her strength in going on with life to strong support from her family. 

“At the age of 37, I was diagnosed with lupus shortly after I delivered my youngest girl. Until now I have been living with lupus for 25 years,” said Chan, who was among those who took part in the Walk-a-Payung walkathon for lupus held at the Perdana Park in Tanjung Aru, here, Sunday.

“Family support is very important for lupus patient and for any chronic disease sufferer,” she said. 

She said at the early stage of her diagnosis, lupus was not so well known and not many people know about the disease.

“I was diagnosed way back where everything had to be sent to Kuala Lumpur for specific test, blood test, but as of now, with the help of the medical team in Queen Elizabeth Hospital, more and more doctors know about this,” said the mother of five, now in her early 60s. 

She also commended their Sandakan support group which helped in creating awareness on the disease.

“We also started collaborating with the Persatuan Systematic Lupus Erythematosus Malaysia (PSLEM) Sabah Chapter in 2013 to create awareness and educate fellow patients,” she said, adding that more and more people know about the disease now. 

As for treatment wise, she said it is quite efficient in a way. 

Chan who is a retiree self-employed who runs her own company is now full time into voluntary work in Sabah Chapter.

Asked if lupus has restricted her ability to move around, she said it has in a way.

“I am living with lupus, in 2009 I was diagnose with kidney involvement where you can say about 50 per cent of SLE patients will end up with kidney involvement, it is very sad to say. 

“Nobody can avoid that that is why we have to follow up with regular clinic reviews and take our medication regularly, and living a lifestyle which is not stressful,” she said. 

On her advice to other lupus patients, she said one thing they must remember is to take their medication regularly and follow up with clinic review, most important is to not stress themselves too much. 

“On the emotional side they have to seek advice, if they find themselves feeling unhappy or doubtful with what is going on with them, they should seek advice and not simply dwell on the negativity. 

“Seek emotional help if you find yourself moody or doubtful of anything that has been bothering you, it can be stress from any factor, family issue, financial issue or some medical side, seek advice,” she said. 

Lupus is an unpredictable chronic autoimmune disease that gives rise to unusual levels of antibodies circulating in a patient’s blood, targeting his or her own body tissues. It affects different parts of the body, including the heart, kidneys, lungs, blood, joints and skin.

“Living with lupus is difficult, a challenge. Pain, feeling tired all the time, are just some of the symptoms they have to struggle with, depression, feeling powerless and alone is common,” according to PSLEM President, Dr Eleen Chong. 

There are currently 342 lupus patients across Sabah, a majority of which are Kadazandusun (about 40 per cent), followed by others such as Chinese, Malays and Indians.



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