Comprising parents and families of patients, the newly-formed Malaysia Lysosomal Diseases Association (MLDA) aims to bring public attention to Lysosomal Storage Diseases (LSD).
“The launch marks an important milestone in the struggle to bring public awareness and attention to this debilitating disease,” said MLDA president Lee Yee Seng in his opening remarks.
He made a moving appeal to the public to acknowledge the right of every child to have equal access to treatment no matter what their medical condition.
He also highlighted the despair and desperate circumstances families with LSD sufferers faced.
Currently, treatment costs between RM300,000 and RM1mil.
“The association hopes to be able to partner the government, the corporate sector and the community to create a much more caring health and medical environment.
“All LSD patients should be able to benefit from the latest medical treatment,” said Lee.
Also speaking at the launch was the Taiwan MPS Society founder and president Virginia Tsai. MPS is one of the many types of LSD.
She too spoke of the importance of partnerships and how by working together, LSD advocacy groups would be able to accomplish much more.
She reiterated Lee’s call for early diagnosis as it enabled a more comprehensive and effective treatment.
However, the launch truly belonged to the LSD children who courageously took the stage to tell their stories and share their hopes and dreams.
This article was published in www.thestar.com.my on 19 October 2011.