PETALING JAYA: More than 250 people have signed up as Friends of MLDA within five days of its launch, pledging to help spread awareness on the rare lysosomal storage diseases (LSD) at their homes, workplaces, schools and communities.

The Malaysian Lysosomal Diseases Association, which launched its Every Life Counts campaign on Feb 25, hopes to get at least 10,000 people to become Friends of MLDA within three months.

The campaign, in conjunction with the World Rare Disease Day yesterday, ends on July 25.

MLDA was formed last May to raise public awareness about the life-threatening LSD.

Until yesterday morning, 235 people had signed up as Friends of MLDA at its booth in Bangsar Village I while 21 employees of HSBC signed up during a lunch-and-learn awareness session.

In an e-mail here, MLDA president Lee Yee Seng hoped more corporations would invite MLDA to go to their offices to conduct sessions, adding that the association had also started the programme in schools.

“As this condition is so rare, it is often misdiagnosed or overlooked, which causes crucial treatment time to be lost,” he said.

There are about 50 different types of LSD diseases, which mostly affect children who often die within a few months or years from birth because of a lack of enzymes that normally eliminate waste in the cells of the body.

There are no cures for most of the LSD and treatment is mostly symptomatic.

However, bone marrow transplantation and enzyme replacement therapy have been tried with some success in some cases.

Lee said those interested to become Friends of MLDA could sign up via www.mymlda.com.

This article was published in www.thestar.com.my on 1 March 2012.

Every Life Counts_The Star Newspaper_Pg 24_1 Mar 12.pdf (English - pdf - 591 Kb)