'Tales of Rare Resilience' wayang kulit series casts light on struggles of patients battling rare disorders (VIDEO)

KUALA LUMPUR, March 6 — In conjunction with World Rare Disease Day, the Malaysia Lysosomal Disease Association (MLDA) has launched a creative fund-raising project using shadow puppetry art or wayang kulit.

Together with creative talents from Fusion Wayang Kulit, MLDA has unveiled a four-part Fusion Wayang Kulit Tales of Rare Resilience video series that narrate the ordeals faced by patients living with lysosomal storage diseases (LSDs).

LSDs are rare metabolic disorders that primarily affect children, impacting their growth and development.

The non-specific symptoms of the disease, high treatment cost and the lack of rare disease specialists in Malaysia often hamper the hopes of patients with LSDs to receive timely treatment.

The four-part Tales of Rare Resilience shed light on their unseen battles, depicting how patients and their families are affected, from social isolation and loneliness to the despair felt by parents witnessing their child's suffering and the uphill battle of seeking the right diagnosis and costly treatment.

“Enzyme Replacement Therapy (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,” MLDA president Ir Lee Yee Seng said.

“We hope that these stories will resonate with all Malaysians, who can surely relate to the pain and suffering of these patients and that they will be inspired to support our mission in any way they can,” he added.

For more details, visit http://www.mymlda.com.