NF2 Day 2024 by Emily Owen

Emily is a former Member of the Board of Trustees, an established author and rare diseases campaigner.

I’m 14 years old. 

I can no longer walk in a straight line. 

I have a headache all the time.

My mum takes me to the GP. 

He prescribes migraine tablets. 

They don’t help.

This scenario is repeated frequently over the next 18 months.

I try every migraine tablet on the market.

I’m 16 years old. 

I’m now falling down the stairs on a regular basis.

My mum finds me banging my head on the floor, trying to bash the headache out of my head.

She takes me to the GP.

No more migraine tablets.

I’m referred to Neurology.

They diagnose NF2.

I’ve never heard of it.

My (new, the old one retired) GP tells me I need to educate him about NF2.

This is not the first time someone will tell me this.

No one knows much about NF2.

Then I’m introduced to NTUK (as it’s now called).

They know about NF2.

They help me navigate the initial stages of coming to terms with all that this thing called NF2 is throwing my way.

They help my family, too.

NF2 exhibits differently in different people.

Over the coming years, I learn that – for me - it means deafness, facial weakness, eye issues, walking issues…

Since I was diagnosed, Specialist Centres have been set up in the U.K, for the treatment of NF2.

I am under one, and am forever grateful to be so. A team of NF2 experts to guide me through my scans and surgeries and symptoms is invaluable.

My GP is invaluable, too, but not for NF2.

I usually mention NF2, just to get it in there but, since the Specialist Centres were established, I don’t need to discuss my NF2 with the GP. If I have a problem, I can email my clinic direct, which is brilliant.

When I see the GP, I talk about ‘normal’ things, eg a cough. 

I recently had an appointment with the Practice Nurse.

Before the appointment, she looked at my notes.

And she came across ‘neurofibromatosis’ for the first time.

People are getting to know about NF.

22  May is World NF2 Day (WNF2D).

For the first time on WNF2D, NF2 is known as ‘NF2-related Schwannomatosis’, having changed its name from Neurofibromatosis Type 2.

Neurofibromatosis Type 2 name change | Nerve Tumours UK

Names change, but symptoms don’t.

Shakespeare wrote, ‘a rose by any other name would smell as sweet.’

Shakespeare didn’t write, ‘NF2 by another name is just as hard.’

But if he had, he’d have been correct.

NF2 is not easy.

At times, it seems all-consuming.

Yet, if you look beyond NF2, you will find people.

People with hopes, and dreams, and talents, and likes, and dislikes, and humour, and knowledge, and favourite colours. 

Today is a day to celebrate people living with NF2.

There will be more days when we are surrounded by the shipwreck NF2 makes of our lives. But we will be clinging to a piece of us within that shipwreck. ‘We’ will still be there, wherever NF2 takes us….

(Adapted from Still Emily)

Still Emily: Seeing Rainbows in the Silence Paperback – 27 July 2021

Emily Owen