I used to be just like everyone else. Able-bodied, normal and typical. I understand being in the “normal” category so when my life took a drastic turn and I was diagnosed with NF2, my perception towards the less privileged, changed.
The most obvious thing I notice is, most people are quite ignorant of diseases and disorders. People are more prone to pay heed to illnesses such as the types of cancer, respiratory problems and old-age ailments like Dementia and Rheumatism. Sadly, conditions such as mine, have less or zero awareness as it is considered very rare.
NF2 causes hearing loss because of tumours growing on the auditory nerves. When we tell a person we are deaf/hearing-impaired, they will automatically categorized us under the general deaf community. Some are even amazed that we can speak because in their minds, “the deaf can’t talk or are mute”. Such stereotypical mindset is a turn-off which I only realized when started being a deafie myself.
I’m glad to see many health talks and seminar being put up by hospitals. It is a great initiative to educate the public. However, only common health problems are being addressed and intensified. Of course, I understand Neurofibromatosis, Type 2 at that, is not going to “sell” if it’s talked on, because well, not many has it. 🤷🏻♀️
But deep down, I wish it will be addressed and recognized someday. I feel so much for people who undergoes rare conditions and incurable diseases as I know how hard it is to explain to others. Some will even make assumptions without knowing the whole story. It is up to us to bring this hidden condition up to the masses. It’s definitely difficult as people don’t usually entertain things that they can’t identify with.
From my end, I did try e-mailing an organisation to ask if there’s any support group for NF2 in Singapore and if there’s any research or study done to find the cure but I have not received any reply thus far. There’s so much we can afford to create awareness but not everyone will remember a rare disorder and its details unless it goes national. 😌