Spotlight on patients’ plight via shadow play

Patients’ stories are told using wayang kulit.

Group raises funds for rare disease sufferers through storytelling, cycling

FINDING the right diagnosis quickly, affording treatment and coping with social isolation are more of a struggle when it comes to rare diseases.

So common are these woes for patients with lysosomal storage diseases (LSDs) in Malaysia that the LSDs community rose once again to build public awareness of their plight, in conjunction with World Rare Disease Day observed on Feb 28.

LSDs are metabolic disorders primarily affecting children, impacting growth and development.

Led by the Malaysia Lysosomal Diseases Association (MLDA), patients and families decided to raise funds this year through wayang kulit (shadow puppetry).

MLDA, a non-profit body, was set up in 2011.

Their stories were shared with Fusion Wayang Kulit (FWK) – an award-winning creative team which has been working since 2012 to revive wayang kulit by relying on digital media and present-day story topics, and characters.

FWK, led by co-founder Tintoy Chuo, then came up with tales depicting different aspects of the lives of LSDs patients and their families.

The four-part Tales of Rare Resilience are “The Unseen Battles of Patients Shunned by Society”, “The Battle Against Weakness in the Fight”, “The Long Quest for Diagnosis” and “Confronting the Darkest Fears and Seeking Hope Amidst the Shadows.”

Lee: MLDA welcomes any form of assistance for LSD patients and their families.

MLDA president Lee Yee Seng is hoping that these uniquely presented stories will resonate with all Malaysians and inspire them to lend their support.

The association also raised funds by teaming up with the International Islamic University Malaysia (IIUM) to organise a long-distance cycling challenge from Feb 28 to March 3.

“MLDA serves as a voice for patients and families living with LSDs as they have limited information and resources to cope with managing these conditions.

“Few people understand the challenges of raising a child with LSD or how symptoms can severely affect a patient’s independence and quality of life,” said Lee.

He highlighted that many symptoms were non-specific, affect multiple organs or mimic more common conditions, making diagnosis difficult.

He said there were only 16 rare disease specialists in Malaysia, often leading to delays in diagnosis.

On treatment costs, Lee said the vital Enzyme Replacement Therapy (ERT) often exceeded RM500,000 a year.

There is also costs related to physical therapy, pain management and dialysis.

“This is why we are determined to raise awareness and funds through efforts like these.

“We welcome all forms of assistance from donations to volunteers,” he said.

FWK’s shadow puppetry videos can be viewed on www.youtube.com/@mldaofficial5828

To volunteer or donate, visit www.mymlda.com