I have been in contact with the doctor that looked into Adnin's case back home. According to him there are cases of MPS reported in Malaysia but he did not specify the type of MPS. There are even cases of 3 siblings in a family that are affected with MPS. What a pity... He is aware of the Enzyme Replacement Therapy (ERT) and admits that it's expensive and funding is not available yet for MPS in Malaysia.
They have a society to look into this sickness called Malaysian Rare Disorders Society (MRDS) and the website is http://www.mrds.org.my/ which I'll surely join when I'm back.
I'm sure there are many more cases which are not reported of which I'm sure with proper treatment, the lives of children affected will be much better...
Monday 28 July 2008
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