The Malaysia Lysosomal Diseases Association (MLDA) unveiled its latest fund-raising effort, working with the creative talents of Fusion Wayang Kulit to shine a spotlight on the many difficult circumstances faced by patients with lysosomal storage diseases (LSDs), which involve many challenges, from diagnosis to treatment.
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. With only 16 rare disease specialists in Malaysia(i) this often leads to delays in diagnosis.
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(ii).
“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,” explained Ir Lee Yee Seng, President of MLDA.
“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.”
This year, MLDA in collaboration with Fusion Wayang Kulit under the leadership of Tintoy Chuo have embarked on a first-of-its-kind ambitious project to share patient-inspired stories through the traditional art of shadow play or more commonly known as wayang kulit with a modern touch.
Each 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.
“We hope that these stories will resonate with all Malaysians, who can surely relate to the pain and suffering of these patients, that they will be inspired to support our mission in any way they can,” said Ir Lee.
“MLDA is a non-profit organisation and we welcome any and all forms of assistance, from donations to volunteers. Please help us to spread the news of this campaign to everyone you know, that we may continue to raise awareness and advocate for access to treatment on behalf of all patients with LSDs.”
View the fusion wayang kulit patient videos here: https://www.youtube.com/@mldaofficial5828 and share it on social media using hashtags: #WorldRareDiseaseDay #MLDA #ColorsOfRD #WayangKulitXRD #HopeForRareDiseases #NoOneLeftBehind #ShareYourColors #RareisMany #RareisStrong #RareisProud
To volunteer or donate, visit the MLDA website, www.mymlda.com.
