Stephanie wrote in:
I am writing to you on behalf of the Malaysia Lysosomal Diseases Association (MLDA). The MLDA is patient advocacy group that was created last year by parents of children suffering from the rare Lysosomal Storage Diseases. LSD is an inherited genetic disease that affects the cells in the body. There is no known cure and the limited treatments available can cost up to RM1million per child per year.
These parents formed the MLDA with two main missions in mind – the first is to raise awareness of this terrible disease and to educate the general public on what LSD is. The second is to advocate for a sustainable healthcare system where all LSD patients have equal and full access to the treatment available.
Today many LSD children do not get the necessary treatment because they simply cannot afford it and there is a limit to the allocations provided by the government for treatment. As they wait, the disease is
causing irreparable damage to their young bodies.
Recently the Association launched its Every Life Counts Campaign – this campaign aims to garner the support of 10, 000 people from around the country to become ‘Friends of MLDA’. By gaining these Friends, the MLDA hopes it is gaining 10, 000 advocates to help spread its message on the importance of a sustainable healthcare system. The more voices we have the stronger we are and the louder our message
We would like to ask you to feature our story on your blog –the story of the disease, the Association and the brave families that live with it day to day and also to promote our Campaign. The topic may not be what you usually cover but your blog reaches out to many Malaysians across the country and could therefore greatly assist the MLDA in achieving and even surpassing our targets.
Please visit our website at www.mymlda.com for more information.
The MMR’s Public Societies and Associations page has been updated to include the link to the Malaysian Lysosomal Diseases Association. Lysosomal storage diseases are pretty rare inherited metobolic disorders and I would not be surprised if there are cases undiagnosed in Malaysia.