KUALA LUMPUR: The Malaysia Lysosomal Diseases Association (MLDA) hopes to raise RM20 million for a fund to provide Lysosomal Storage Disease (LSD) patients sufficient treatment.
Its president, Lee Yee Seng said the association now only had RM510,300 in its account and hoped more donations from Malaysians throughout the nation.
“To date, MLDA has identified 44 patients with LSDs and 20 of them are on the waiting list to receive treatment because of insufficient funds. Each patient needs at least RM1 million per annum to undergo treatment,” he said after taking part in the Ice Bucket Challenge (IBC) for LSDs, here, yesterday.
He said LSD patients needed to undergo enzyme replacement therapy (ERT) in the early stage of discovery.
“However, access to such medical care and services are hard to come for many LSD patients, causing undue suffering and despair,” he added.
At yesterday’s event, more than 100 people took part in the IBC to show their support and to help create awareness that LSD patients need to be treated as soon as possible.
LSDs comprise a family of more than 40 distinct diseases resulting from enzymatic deficiencies leading to accumulation of unwanted substances in lysosomes of various cell types.
Lysosomes are the cellular recycling centres where materials are taken apart into their basic components for re-use in the cell.
As a group, these are the most common type of genetic disorders, with an estimated combined frequency of one in every 7,700 live births, thus representing a significant worldwide health problem. — Bernama