3,300 turn up for ‘Run for Rare’ event

PETALING JAYA: Just two weeks ago, seven-year-old Nur Afina Balqis Ammar’s legs were bound in cast as she recuperated from an operation to straighten her legs.

Her father Mohd Azuan Abdul Jalil, 38, said her legs were “in an X-shape” as she had knocked knees, adding that the girl would need more surgeries to correct her curved spine.

“I have sakit tulang (bone pain). I’ve had it since I was young,” said Nur Afina, who suffers from Muco­polysaccharidosis type IV (MPS IV), a rare condition affecting only one in 200,000 to 300,000 people.

Nur Afina and her family were among the 3,300 patients, families and supporters representing all forms of rare illness – from Lyso­somal Storage Diseases to albinism – who gathered in Sunway City for the inaugural “Run for Rare” event yesterday.

The run was held in conjunction with the annual World Rare Disease Day, which falls on the last day of February.

It was organised by the Malaysia Lysosomal Diseases Association in partnership with Sunway Group and EC Pixels.

Also joining in the run were Health Minister Datuk Seri Dr Dzulkefly Ahmad, Subang Jaya assemblyman Michelle Ng and Kinrara assemblyman Ng Sze Han.

“Most patients with rare diseases usually stay at home due to the stigma and taboos surrounding their diseases,” said association president Lee Yee Seng.

He said the average medical bill for a rare disease patient was RM1mil per year, adding that they required support from the government, public as well as the private sector.

Dzulkefly, who flagged off the event, said there was lack of awareness on rare diseases and voiced the government’s commitment to increase the Budget allocation to help patients and their families.

“There are hundreds of rare diseases that require attention.

“What’s important is that we respond to the request to enhance the budget allocation and bring about an inclusive society where no one is left behind – however difficult and rare the disease is,” he said.