Helpline 07939 046 030

World NF 2 Day May 22nd 2020

19 May 2020

For the second year running Nerve Tumours UK celebrates World NF2 Day on May 22nd. Emily Owen, Member of our Board of Trustees and affected by NF2 will take over our social media for the day. This year's celebration will reflect highly on the impact of the current crisis on those affected by NF2. We at Nerve Tumours UK feel that the voices of those affected by NF2 do not get kudos they deserve being categorised as a rare disease on World NF Day and we are hereby providing a specific forum and day for those affected. 

Today On World NF Day - NTUK is going Theatrical 

Neurofibromatosis Type 2 is a rare genetic disorder that is caused by another genetic “spelling mistake” in a single gene on chromosome 22. The misprinted gene will be present at birth, but signs of the condition do not usually appear until the teenage years, twenties or later. NF2 can be passed on from a parent OR it can start in a family with no previous history of the disorder. It occurs in 1 in 30,000 of the population but Nerve Tumours UK is here to help.

Emily Owen is a Member of our Board of Trustees & an established author.

We speak to her about how NF2 has affected her daily life and how the current Covid19 crisis & lockdown has created special challenges for both herself personally & for Nerve Tumours UK. 

""I joined the board some years ago as I wanted to raise awareness of NF and its realities. I have received such support from NTUK (under various names!) over the years, particularly at the start of my NF2 journey, and I wanted to give something back if I could. As well as living with NF2, and all that brings, I write. I published my memoir, Still Emily, and I also write Christian devotional books.""

– Emily

Emily Owen who has NF2 on Life in Lockdown

I was due to have surgery, which had to be cancelled as the country went into lockdown. Who knows when that surgery will happen now.

A surprising effect at the beginning of lockdown, was that I felt more deaf. I’m still not entirely sure why, even as I type this. Suddenly, I could no longer text a friend and say, ‘shall we meet for lunch?’, but neither could I pick up the phone and chat instead (I need to lipread).

I have since discovered possibilities of video-calling. If it is one to one, and the person I am speaking to is VERY patient, I manage better than I would have thought.

Alongside writing, which has not really been affected by lockdown (I don’t tend to write when surrounded by people!), I speak, in various public settings, and of course that has been affected. I miss the face-to-face contact and dialogue I am used to at those events.

‘NF2 invites me to exist. Not only to exist, but to do so in a world dominated by itself. I want to more than exist! I want to live. And, in order to live…I need to accept. For me, refusal to accept the circumstances that I can’t change is merely existing. Refusal becomes a barrier, stopping me living the life beyond NF2 that I know is there. But, you know what? When I accept the things I can’t change, I might just glimpse rainbows.’ (Still Emily)

I have a little-known hashtag, which is #EverydayRainbows. It means finding something good in every day, however hard it is to see.

When I was first diagnosed with NF2, I had no idea what it meant, or where to turn. Thankfully, I was pointed to the charity, and helped to navigate this new world that had an unpronounceable name. I can’t say the charity magically turned things into an easy ride – I still had/have to get through the NF maze – but they made it so much less hard.

Charities like Nerve Tumours UK being solely dependent on public funding do face hard times in the current crisis. If I had to point to two struggles for small charities, such as ours, I would say ‘Funding’ and ‘Awareness’. The challenge for us is to make ourselves known.

For me, NF2 Day is not about NF2, it is about the people affected by NF2. The people who overcome the challenges and limitations of NF2, every day, and do it all again tomorrow. Each one of those people is the reason we celebrate World NF2 Day. So, why is it important we celebrate? Because of the people we celebrate.

Filter News

Filter by Date
Category
Reset

Noreen’s story

Read Noreen's incredibly honest & moving blog about living with NF1

Read More

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

Read More

Rare Disease Day 2022

Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022

Read More

Runderpants Winchester 2022

The Runderpants fun run makes a successful return to Winchester

Read More

NF1 Research study with fly model

How can studying the brain of a fruit fly help with understanding of NF1?

Read More

Stuart’s Schwannoma Story Part Two

Stuart's update takes us through the operation to remove the Schwannoma, recovery and getting back to marathon training.

Read More

Sian & Connor’s story

Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben

Read More

Anita, aka Fat Lady Slim, is running the London Marathon for NTUK

Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon

Read More

Pat’s Triathlon Challenge

Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support

Read More