In the past years a lot has changed in Asia when it comes to awareness regarding Pompe disease. Some countries had already developed a high awareness around Pompe disease, Taiwan, Japan, The Philippines, South Korea and India are good examples of such countries. But in many other countries patients and their families were often isolated and alone. This is now changing. Here are three examples of Asian countries who recently became actively involved in Pompe disease.
In Malaysia patients with lysosomal storage diseases founded the Malaysia Lysosomal Diseases Association (MLDA). Mr. Lee Yee Seng, President of the MLDA, 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. Mr. Lee Yee Seng has 2 children with Pompe Disease and knows very well himself what living with a lysosomal storage disease means: “Children with LSD will be not able to enjoy the kind of life above with their parents if they are not treated early. This disease will erode their quality of life every single day, and will continuously do so until they are no more. No loving parents should have to bear witness of the destruction of their innocent children from these treatable diseases.
Today, with the full support from the board members, we will continue our effort to fight for the rights and liberties of these small and neglected populations. To such a task we should dedicate our lives and our fortunes. We are optimistic that the Ministry of Health under the current administration will continue providing new hope for the treatment of LSD patients. And that the Government of the people, by the people, for the people shall act with integrity and bring us pride. On you depend their tomorrow.”
Patients with lysosomal storage diseases now come together, meet and work to get good care and treatment in their country. For more information on their organisation, please go their website.
The Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group (HKMPS) started in 1998. Initially it was focused on MPS related diseases, but is now involved with other rare diseases too and Pompe Disease is one of them. At the AMDA/IPA Pompe Conference in San Antonio in October 2011, Hong Kong was represented by Mr. Terry Lai. He is a Pompe patient and engaged to support Pompe patients and others in Hong Kong. More information can be found on website.
In 2011 Rare Disorders Society Singapore (RDSS) has been founded by parents with children suffering from lysosomal storage disorders to advocate for patients’ rights and create awareness about various life threatening rare diseases. RDSS is involved in all kinds of activities such as seeking sustainable treatment for rare diseases, provided non Financial support, collaborate with hospitals to get the care that is needed, policy lobbying and promote international collaboration. For more information on their organisation you can go to their website.