Neurofibromatosis (NF) Awareness Month

Image by Artwistical from Canva Pro

In the month of May, we observe Neurofibromatosis (NF) Awareness Month, a time dedicated to raising understanding about a condition that many people have heard little about. Within that month, World NF Day falls on 17 May 2026, reminding us of the importance of awareness, education, and empathy for those living with NF.

Why am I sharing this?

Because I live with NF1 — Neurofibromatosis Type 1. I may have mentioned it to some people before, and I have never been afraid of sharing it. Over time, I have come to realise that speaking about it openly helps bring awareness to something that is often unseen or misunderstood.

When I was younger, I did not understand why I looked different from many of my peers. I had café-au-lait spots visible on my body, and physically I stood out in another way as well. I was unusually tall for my age, often at least a head taller than the other children around me.

Being visibly different often led to misunderstanding.

Some of my peers kept their distance because they were afraid that whatever I had might be contagious. Others focused on my height and labelled me in unkind ways - at times even calling me a “monster.” Back then, I told myself not to take those words to heart, but words have a way of leaving quiet impressions that linger longer than we expect.

There were also moments when I was told to cover up more — to wear clothing that would hide my skin so that I would attract less attention, fewer stares, and fewer curious or uncomfortable glances. It was likely said with good intentions, perhaps as a way to protect me from judgement. But hearing that also carried its own quiet message: that something about me should be hidden.

For a while, a question quietly stayed with me:
Why can’t I just be normal?

But over time, another thought slowly followed:
What does “normal” really mean?

Medically, NF1 is a genetic condition, often passed down through families. Yet in my case, no one else in my family has it. This means it likely resulted from a spontaneous gene mutation. Though a small part of me still jokes that I’m waiting for Professor X to recruit me.

For many years, I did not fully understand what my body was experiencing. It was only much later that the awareness and diagnosis of NF1 helped explain so many things I had lived with growing up.

Today, I understand my body much better.

Alongside the café-au-lait spots, I also have tumours both on the surface of my skin and beneath it. Some of the ones under the skin are firm and lie along nerves, which can make certain movements or activities painful. I also live with scoliosis, another condition commonly associated with NF1. In many ways, these are all part of the package that comes with the condition.

There is no cure.

And yes, it has brought moments of despair, moments filled with stares, and quiet questions of “Why me?”

Over the years, however, I have worked, and continue to work, to shift my mindset. Instead of asking “Why me?” from a place of despair or victimhood, I try to ask “Why me?” as an invitation: an invitation to make a difference, to speak up, to share my story, and to help foster understanding.

I refuse to let NF define or limit what I can do.

NF also affects the workplace. Like many invisible conditions, it does not always appear on forms or in simple explanations. It can mean managing pain, fluctuations in energy, medical appointments, and making decisions about what to disclose and when.

What truly helps is not special treatment.

What helps is understanding, flexibility, and psychological safety.

To anyone living with NF — you are not alone.
To those who know someone with NF — you are not alone either.

Every NF journey is different. But awareness, empathy, and community make all the difference — at home, in society, and in the workplace.

So let’s continue learning, listening, and supporting one another.