KUALA LUMPUR: Wayang kulit is being used to shed light on the challenges faced by patients with lysosomal storage diseases (LSDs).
The Malaysia Lysosomal Diseases Association (MLDA), in collaboration with Fusion Wayang Kulit, recently released a four-part series titled Fusion Wayang Kulit Tales of Rare Resilience on its official YouTube channel.
Based on real patients stories, the project was carried out in conjunction with World Rare Disease Day, as well as to raise funds for the treatment of the rare affliction.
Each modern wayang kulit tale depicts a different aspect of how patients and their families are affected, from social isolation and loneliness, the despair parents feel when faced with their child's suffering, to the uphill battle in search of the right diagnosis and the financial burden of treatment.
Lysosomal storage diseases (LSDs) are rare metabolic disorders that primarily affect children, impacting their growth and development.
Many of the symptoms are non-specific, affect multiple organs or mimic more common conditions, making them difficult to diagnose.
The challenges persist in securing access to treatment following diagnosis.Enzyme Replacement Therapy (ERT) comes with a high cost, often exceeding RM500,000 per year, and depending on the specific rare disease and the patient's unique requirements, the expenses could escalate further.
Given the constraints of government-based funding, with minimal annual increments, many patients find themselves in need of financial assistance from diverse sources to cover the expenses of ERT.
Additionally, there are the associated costs of supportive therapies such as physical therapy, pain management, dialysis, and more.
"MLDA serves as a voice for patients with LSD as they, together with their families and caregivers, 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 MLDA president Ir Lee Yee Seng in a recent statement.
"Treatment with ERT is essential to keep their condition from getting worse, relieve symptoms and prolong their lifespan. However, the cost is prohibitive for the average patient.
"This is why we are determined in our mission to raise awareness about these conditions and help provide financial support through sponsorships and fund-raising efforts like these," he added.
View the fusion wayang kulit patient videos at https://www.youtube.com/@mldaofficial5828.
To volunteer or donate, visit www.mymlda.com.
