Why caring about rare disorders matters


  • In Your Face
  • Thursday, 21 Feb 2019

ONCE again, it's that time of the year when we commemorate the fight against rare disorders, as World Rare Disorders Day is just a week away on Feb 28.

Once again, I'm going to appeal to all reading this to care about the needs of those living with life-threatening or chronically debilitating disorders that affect one in every four thousand people or fewer.

And yes, this is why I spoke to Malaysian Rare Disorders Society (MRDS) president Datuk Hatijah Ayob once again to see if the needs of Malaysians supported by the Society – and their caregivers – are being met.

Talking to her, she said that one area that needs improvement is that of access to medications that could help those with rare disorders.

"Medicines are still not available for all rare disorders; some medicines are on the market, but there is no money available for them. There has to be a budget from the government for these medications and a policy to determine who gets what," she said.

Hatijah also had suggestions on how we Malaysians as a whole can improve to be better allies for people with rare disorders, suggesting that we could try to donate to the relevant societies and help families fighting rare disorders.

"There might be no cure for what these people, these children face but they have to go for therapies or other forms of supportive care. There should be more empathy for people with rare disorders and their families," she said.

Aside from Hatijah, I also spoke to Phelan McDermid Syndrome Foundation Southeast Asia Regional Representative Nadiah Hanim – and she began by encouraging Malaysians to live by the principle of courtesy and morality enshrined in our Rukunegara.

"Malaysians are already kind and compassionate people in general. So let's improve on that. Show kindness and not disgust, especially to our friends with more physically apparent symptoms.

Come say hi, as we don't bite. Realize that an individual with a rare disorder is just another person that like you, will thrive on positivity," she said.

She also added that an inclusive and integrated society does not always require policies, which she adds are meant to guide people.

"Some things require big budgets, but others really require a little compassion and common sense. Getting up for someone on a wheelchair on public transport so they can have space – doesn't need money and doesn't only benefit people with rare disorders," she said.

"Greeting someone instead of turning away or telling your kids that this is what will happen to them if they are naughty also doesn't take money," added Nadiah.

She also urged employers to realize that talent comes in all shapes and sizes and to go out of their comfort zones and give all people a fair chance.

"No one will be great if never given the opportunity to shine," she said.

At this point, Nadiah also had a message for Malaysians with rare disorders, and if I may say – it's a potent one.

"For those who can, and believe that you can,your labels are just a small part of who you are and whether it completely defines you or not is up to you. You have been given a challenge that is also your gift" she said.

Nadiah urged those who can to see beyond their labels and push themselves to explore and build their capabilities and inner strength as a person.

"The world will not hand you a silver platter just because you are different. To survive and to succeed you need to work hard, stay focused and build resilience just like everyone else," she added.

Another friend, Rachel Siew urged doctors to keep themselves abreast of the latest developments when it comes to rare disorders, as changes and new developments are happening at a rapid pace.

"There have been loads of improvement since I was initially diagnosed back in the early 90s. It is better to be diagnosed early to get early treatment so that individuals will not deteriorate so fast," said Siew, who lives with Morquio syndrome, a rare genetic disorder in which the body is unable to break down sugar chains that help build bone, cartilage, cornea, skin and connective tissue.

She also urged the government to continue with the provisions that help those with rare disorders, using her Enzyme Replacement Therapy as an example.

"My Enzyme Replacement Therapy costs RM1.6 mil per annum. No family can afford such an exorbitant sum. The government would have to step in to assist with financial sustainability, and they should continue with the budget provision for years to come as everyone has a right to live," she said.

Siew also shared her observations on the education system with me, praising the new all-inclusive policy now in place.

I am so glad that there is now a policy which accepts all individuals in the schooling system.  Gaining knowledge is key and vital for everyone whether you are living with a rare disorder or not," she said.

And with that, the path ahead is clear – both for Rare Disorders Day and the year ahead. Can we all come together as Malaysians to support those fighting rare disorders?
I'd like to believe we can.


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