What A Female Artist Drew For Rare Disease – And Why It Matters

Introvert. Unsociable. Slow. Chiang Sook Siang recalls how at a young age people ridiculed her, mocked her abilities and sometimes beat her up just because she was different.

Other girls at school had friends they could spend time with and play. She didn’t. She was a girl misunderstood. She feared talking to anyone. She was all alone. Until today, she does have the occasional fear of meeting people and is quiet unless spoken to.

Unknown to her and her family at that time was the fact that she is not only an autistic child but also a super talented artist that soon will unleash her inner strength of love and compassion through art. Armed with an Engineering Diploma from UTM, English Literature Degree from UPM and Diploma in Fine Art from Aswara, Sook Siang finally found solace in her art and expresses it in her own unique way.

Now, she is done reminiscing her past and is speaking up for those who need a voice through art. This year, she unveils her first solo exhibition entitled “Rare Lives”.

The “Rare Lives” Charity Art Exhibition at the National Art Gallery in Kuala Lumpur highlights the lives of people and children living with a rare disease. Sook Siang contributed her time and effort to paint these portraits, with hopes of shedding a positive light on the lives these individuals. Each portrait represents the many characteristics of the subject such as serenity, grit, fortitude, beauty, radiance, confidence and more.

GET ACQUAINTED WITH SOOK SIANG’S “RARE LIVES” SUBJECTS HERE:

For any sales inquiries of artworks, please contact: Zety (MALAYSIA LYSOSOMAL DISEASES ASSOCIATION) +60 19 6899 620

The exhibition is made possible in collaboration with the Ministry of Tourism, Arts and Culture Malaysia, the National Art Gallery and The Make It Right Movement (MIRM) powered by BAC.

“There are 7,000 different rare diseases and in Malaysia, 89 patients living with Lysosomal Storage Diseases (LSD) are registered with MLDA,” said Mr. Lee Yee Seng, President of MLDA whose two daughters live with LSD which affects their enzymes. “Some of these patients are likely to have no treatment as they are invisible by choice to many in the medical community, the research institutes, and government due to lack of scientific knowledge of the disease”. Because these diseases lack treatment of any kind, Mr. Lee hopes “Rare Lives” raises funds, creates awareness, and most importantly, puts a face to these hardly-studied diseases.

There is no cure for LSD. Patients can only treat this disease through Enzyme Replacement Therapy (ERT) which reduces the severity of the disease. However, this treatment is exorbitantly expensive and can cost up to RM1.2 million per patient per year.

“Malaysia needs to see LSD”, said Rachel Siew, Author and Community Advocate of MIRM. “The community needs to understand and see our humanity. We are not our disease and we are deserving of equal treatment just like any other disease,” she adds.

Despite the sombre details, the expressive quality of her images and paintings captures the human condition. Her own style is somewhat near as photorealistic; undoubtedly Sook Siang’s personality is apparent in her drawings.

“It’s really important for the public to realise that when it comes to rare diseases, lots of unmet medical needs and gaps are often faced by those affected,” Sook Siang said “What the world needs now is love and I hope to share this with my art.”
“Rare Lives” runs until 17 March 2019 at the Creative Space, National Art Gallery, Kuala Lumpur. All proceeds will go to deserving LSD patients under the care of MLDA. Members of the public are also encouraged to donate to Pertubuhan Penyakit Lisosomal Malaysia, Public Bank Account Number 3169692035 (Donation reference RARELIVES).

For any sales inquiries of artworks, please contact: Zety (MALAYSIA LYSOSOMAL DISEASES ASSOCIATION) +60 19 6899 620