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Over 3,000 runners create awareness for rare disease
Published on: Monday, March 04, 2019

PETALING JAYA: More than 3,300 runners participated in a five-kilometre run in Sunway City here to raise awareness and give support for rare disease patients.

Organised by Malaysia Lysosomal Diseases Association (MLDA), the ‘Run For Care’ event was held in conjunction with World Rare Disease Day, which takes place on Feb 28 every year around the world.

MLDA President Lee Yee Seng said the programme, which was organised  for the first time in Malaysia focused on bridging the gap between medical, social and support services to address the challenges faced by rare disease patients and families.

“Aside from running, the runners were encouraged to participate in games stations which gave runners a chance to step into the shoes of rare disease patients, with activities that stimulated difficulties faced by patients in their daily lives.

“The four game station featured challenges such as wheelchair obstacle, using a dumb bell weighted brush for calligraphy, enduring a tickling session with feathers and drinking special formula milk,” he said in his speech at the event.

Lee said they managed to raise RM100,000 through the event and the funds will be used to benefit lysosomal storage disease (LSD) patients who need medical support and care.

Also present was Health Minister Datuk Seri Dr Dzulkefly Ahmad, who officiated the event.

Dr Dzulkefly in his speech commended the successful partnership between Sunway Group and NGOs such as Celebral Palsy Group and MLDA which had brought the runners and stakeholders together to raise awareness on the disease.

He said about 60 percent of rare disease patients in Malaysia are receiving treatment while 40 percent of rare disease sufferers are still seeking for answers to their daily suffering.

“The relative unfamiliarity of rare disease often result in delays and errors in diagnoses, the lack of clinical expertise, and lesser treatment options which causes terrible suffering and stress for the patients who are afflicted with rare diseases as well as their families,” he said.

He said the government had allocated RM16 million under the 2019 Budget for the treatment of patients with rare diseases and looking forward to work towards better diagnosis and treatment options for them.

Meanwhile a mother who has a child with rare disease, Siti Nur Baizura Ishak, 30, said her daughter Nur Afrina Balqis Ammar, 7, is suffering from Morquio Syndrome known as MPS4A.

“She not only has swollen legs, but the growth of her height was also restricted although her brain growth is just like the other normal children,” she said. – Bernama

 



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