There are so many consequences that could arise if we lack knowledge and understanding of a certain topic. First of all, after years of having this condition, I got to know that very little people actually knows what is Neurofibromatosis. That includes nurses, who might not have cared for hearing-impaired patients that much.

Apart from being generalized with the deaf community, a lot of people that I encounter have the tendency to be surprised when I started speaking. I was appalled at how narrow-minded we all can be. But I don’t blame them; it’s pretty much human nature not knowing things and stuff. Especially if it’s not an “everyday thing.”

However, I see the need to stress on education and to eliminate ignorance. When I was first diagnosed, my family and myself was still ignorant about NF because it was something new for us. Dealing with this condition pushed us to do research and study. The amount of information we can get online is really wide and could be daunting. But it gave us the idea of what this condition consists of, its causes, progression and possible treatments. It’s evident that as human beings, it’s our nature to not know about an ailment until it happens to us.

When we know about it, it’s only helpful if we try to understand the situation. Not understanding can also lead to frustration in familial relationships as we got into arguments when we misunderstand. The solution for me is very easy, truth be told. It is, to write. For me, written messages which allow me to read is the best answer.
I am also misunderstood a lot on what can I hear and what I can’t. Most times, I would ask whoever’s speaking to me to slow down; if I still cannot get it, I’ll ask them to write. Writing has become such a huge part of me.

As with other medical condition, knowing how to help a person with their condition might be beneficial. Should person A encounter person B who is facing difficulties due to his condition, at least person A would know how to help him. That said, medical professionals should also upgrade their knowledge and learn in depth about the many ailments, no matter how rare or common it is.

Talks and seminars is always kept up to date on hospital websites. Hospitals usually have pamphlets and brochures too for people to know more. While Neurofibromatosis do not have its own platform to create awareness, my hope is for it to be studied and widely recognized just like other conditions, especially in Singapore. 🙂