NEUROFIBROMATOSIS Type 2, or NF2 for short. A mouthful, isn’t it? Wouldn’t disagree there. Sounds alien, even dangerous. It certainly sounds like word salad!
When I first heard of it 10 years ago, I didn't think very much of it, truth be told. To me it was a tongue-twister of a genetic disorder, one that a friend of mine happened to have been born with.
I could barely pronounce it, let alone understand what it did to the bodies of those living with NF. As it was, I understood at the time that it is an incurable genetic condition which causes non-cancerous tumours to grow anywhere in the brain, along the spinal cord and central nervous system.
This means that for someone living with NF2, their brain, spine and nerves are filled with an assortment of growths. These tumours can cause deafness, blindness or paralysis — or all of the above.
What I certainly didn't know then was that NF2 is the most common genetic disorder out there, more common than cystic fibrosis or Down Syndrome, affecting one in every 33,000 people worldwide.
And then, as fate would have it - I wound up loving Keisha Petrus, a woman who lived with NF2, and through her, I learned why we all should back those living with NF2, those supporting NF2 survivors, or those raising awareness about the disorder.
I saw how she and others like her clung on to living life to the fullest, how she strove to inspire others as the disorder robbed her of her hearing, her ability to walk and ultimately her life over the course of our nine years together.
This is why I'm highlighting these people here, In Your Face this time around.
May's NF Awareness Month worldwide - and it's time for some light to be thrown on Works of Gratitude, a foundation for NFers that's being set up by the NFer I met a decade ago, Yvonne Foong.
What does Works of Gratitude aim to do? Well, in Foong's words, it aims to address the main challenges faced by Malaysian NFers - those living with NF1, NF2 and Schwannamatosis.
"The main challenge comes with access to medical care because the doctors who have the relevant experience and knowledge are limited. So patients have to wait in long queues to see these doctors. Patients do not know who to go to, and it can be hard to reach them," she said.
Foong also pointed out issues with knowledge-sharing among medical practitioners.
"In Malaysia, medical expertise is developing very slowly for many reasons, one of them being that knowledge is not being passed between doctors. So without knowledge and understanding, we have a long way to go despite the decades of addressing patients with this condition in Malaysia,"
Foong said that because doctors are not sharing information, they are not learning. She added that Works of Gratitude hopes to address this by setting up a NF resource centre in Petaling Jaya.
"With this centre, patients and doctors have a centre they can come to to further understand NF. We will have visiting doctors coming to give talks and maybe free consultation to patients. It will also be a place for survivors to gather to give support to each other," said Foong.
She added that with the centre which is planned to be launched in December 2015, it is hoped that doctors would take the condition more seriously and research into treatments can then be intensified.
"Without the centre, doctors would be less interested as it would seem like there are not enough survivors living with the condition. When survivors come together, doctors and the public can see that there is a population of NFers in Malaysia," she said.
So how can you help Works of Gratitude get up and running?
"Medical practitioners, family members can help us identify NFers we can approach. It is not just for documentation purposes and putting faces to names. We can also reach out to them to give them any assistance they require," said Works of Gratitude project director Sha Kok Tein.
He said that another option would be to spread the word about Works of Gratitude among non-governmental organisations, medical professionals to generate support, participation and interest in the centre and its efforts.
And if you're wondering why you should care about this foundation and Malaysian NFers, well, as Foong says; "I do not tell people how terrible it is. But I choose to inspire people with compassion and kindness. Everyone needs love, and we hope to inspire people to be kind and loving."
I'm on board. Will you be?