Seeking OKU Status for Rare Disease Sufferers

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Did you know that the last day of February is Rare Disease Day? 

Well, this year, the Malaysian Rare Disorders Society (MRDS) took the opportunity to celebrate the day and highlight the plight of people suffering from rare diseases. 

MRDS is also lobbying for sufferers to be categorised as disabled or OKU.

President Datuk Hatijah Ayob said the organisation would work towards improving the lives of patients and families with rare disorders.

“We have gathered together rare disorder patients under MRDS to let patients know that they are not alone. We will work together and help each other to identify the problems,” said Hatijah.

She said Rare Disease Day 2017 was an opportunity for those afflicted to voice their opinion and give suggestions to the OKU Development Department (JPOKU).

“JPOKU should consider people with rare diseases as another category of disabled people because their disorders may cause them physical and mental disability over the long term. 

“Patients face difficulty in applying for a job compared to regular people. Society should give them a chance, especially the private sector.

“Most medicine for rare disorder patients are difficult to source and expensive in Malaysia. So, we hope to get assistance from the pharmaceutical industry, as well as the Government, to find solutions to reduce prices.

JPOKU chief deputy director Pathmanathan Nalasamy said the department was working with MRDS on categorising people with rare disorders as OKU.

“Currently, resolving the issue of people with rare disease as another category under OKU is still a work in progress,” he said. 

Pathmanathan noted that some already met JPOKU’s existing criteria and were eligible to apply for an OKU card and enjoy the welfare benefits offered by the Government. 

Juliana Louise, 36, who has fibrodysplasia ossificans progressiva (FOP) disease, said she experienced a lot of difficulty in moving about as many places in the country were still not OKU-friendly, with the exception of Kuala Lumpur.

“Most areas of Kuala Lumpur are OKU-friendly with suitable infrastructure compared to the other states in Malaysia.

“I also find that people in Malaysia are usually not bothered about helping an OKU, especially if that person is a stranger.

“I am still working in accounting, even though I have difficulty moving about. We appreciate the MRDS committee’s effort. I hope they can help other families and especially children affected by rare diseases,” she said.