Helpline 07939 046 030

Ella’s Blog: The Flu Jab

09 June 2020

Ella is a teenager with Neurofibromatosis Type1, who writes regularly on the Nerve Tumours UK website, Ella’s Editorial. Here she writes about her experience as a teenager facing a changing world and the impact of coronavirus on her day to day activities. 


Hello everyone, this will be my last Lockdown post and I will return to posting every month in my editorial

During the 11 weeks of Lockdown I’ve learned a lot about myself. I definitely need structure to my day to help me cope and I find it hard to amuse myself during the day. This has impacted my parents, as my Dad is a key worker and needs his rest. I must admit, I’ve not been that understanding.

I can't imagine life going back to the ‘old normal', well not for at least 12 months.

The constant hand washing has played into my OCD, which has worried me as I don’t like touching or being touched. It’s almost as if Covid19 understood me. 

At school I have one good friend, Zoe. I didn’t realise how much she meant to me till recently. She really understands me and doesn’t put any pressure on me. I doubt if I’ll see her again, as we are going to different form colleges.

One positive is that I challenged myself to grow my nails, due to anxiety I tear at them. I’m pleased to say that I actually have some white tips showing now.

Another skill I’m challenging myself to conquer is crocheting. I’ve bought a kit from Aldi and it’s to make Dobby from Harry Potter, its proving difficult to do.

My brother has been in the UK during the whole of Lockdown, but because he lives elsewhere, I’ve hardly seen him until recently.  Now it’s nearly time for him to go back to Denmark. 

We hear today that deaths due to Covid19 have gone down to double numbers, let’s hope it becomes no deaths very soon. My Grandma has lost 5 friends due to Covid19 in a very short time, it’s so sad.

Let’s hope there’s better times to come.

Reading books - gradually turning back to normal

Hi everyone, how was the last week of lockdown been?

During lockdown I have read a couple of books. Firstly, I read Noughts and crosses, which is a dystopian themed young adult novel by Malorie Blackman. The first half of the novel was okay because you can empathise with the characters and the relationship between the protagonists (Sephy and Callum). However, towards the end of the novel I felt disappointed by the death of Callum because his story arc was left incomplete. Meanwhile Sephy's story arc was allowed to carry on into the next story in the book series.

The second book I read through lockdown was called 1984, which is another dystopian novel by George Orwell.The book is set during the year 1984.

At first the book seemed challenging because there was new vocabulary that I didn't understand. Furthermore the characters in the novel seemed realistic, especially Julia and Winston. They defied Big Brother's law of not having a relationship with someone who was married, because Winston was previously married. Winston had to separate from his wife because it was illegal to divorce in the novel.

As lockdown is starting to ease I'm worried about my impending PIP assessment, because I think that the assessor won't understand me and how my illness impacts on my day to day life.

On Friday I finally finished my first Geography essay for A level. It was  very challenging because I initially didn't understand how to write a report. With a little help I was able to complete it.

On Sunday as a treat I had American style pancakes with grapes, strawberries and a banana for breakfast. It was very tasty and delicious as it filled me up.

Reflection's on World NF Day

Hi everyone. It's NF awareness month and in this part of my blog I'm going to shine a light on people who raised awareness for NF.

Firstly, I’d like to mention David Perks, who is an actor from the BBC daytime soap Doctors. He started to raise awareness of NF when my Mom asked him a few years back. Since then without being asked he takes a picture of himself holding the ‘Shine a Light poster’ and puts it on his social media pages. This year he proudly wore a Nerve Tumours tee-shirt.

Secondly there’s Noreen from Northern Ireland. She raises awareness because her birthday is in the month of May, which is also NF awareness month.

Maureen usually fundraises, by asking for donations instead of presents. She selflessly give this to Nerve Tumours UK

Next is Carolyn Smyth one of our precious NF specialist nurses.

She lit up her garden in blue to raise awareness and show her support.

Finally is Joesp, who is from Barcelona. He shines a light because he wanted to share his struggles with finding out he had the condition. He said he felt alone, but after finding an NF group he realised he wasn’t alone and found strength from others. He shows he lives a normal life the same as anyone else. I thought it was brilliant when he said ‘Our illness is progressive, and that means our resiliency needs to strengthen as long as the illness goes forward. We have an uncertain future, but in fact the future is uncertain by itself, and it is definitely better like that.’

Here’s to next year’s NF Awareness Month, let’s hope we can share the day physically together with our friends and families.

Monotony in Lockdown - 19th May 2020

Hi everyone, how are you doing this week? 

I’m finding the lockdown extremely boring and I wish it was over. However, I can’t use my annual Blenheim palace pass because everything is shut.

This week I started doing work that has been set for me by my prospective 6th form colleges. I had to do a Geography report on the Nepal 2015 earthquake. I found it hard at first because I have never done a report before. However my brother helped me by helping me plan the essay. Meanwhile the business work was easy because the sixth form never did business as a GCSE subject.

On Thursday my dad allowed me to go food shopping, only if I stayed in the car. When we arrived the car park looked like an apocalypse. 

Memories & connection with the past - 12th May 2020

How was your week?

Friday I made decorations for our front window in commemoration of VE Day and my ancestors who fought for their country.

I watched the VE Day celebrations on tv and then a film called ‘The Guernsey Literary and Potato Peel Society’. It was set in 1946 with flash backs to Nazi occupation of the island. It brought tears to my eyes, as it brought home how evil people were and the impact war has on families. Definitely worth a watch on BBC iplayer. 

We did our usual ‘Non pub pub quiz, it’s becoming a regular thing. I watched the Queens speech and found her very down to earth and I think she showed a very caring side to her public. 

As a family we joined in and sang ‘We’ll meet again’.

My cousin Lee has been sharing research he has done on our family history on my Mum's side.

There is a family Bible that the family has had since 1853 from Potterhamworth in Lincolnshire. Tradition was when a new baby was born you entered their names into the Bible.

It’s sad my brother is the double of his Grandad Alf, who died before my Mom was born. He signed up to fight in WW1 and he lied about his age, he was only 15. His Mom found out and told the authorities and he was returned home. When he came of age he enlisted again.

Is Anyone Going Insane? - 5th May 2020

This week I watched a Danish period drama called Badehotellet translated as Seaside Hotel.

The show is set in 1920s Denmark in a hotel near the sea. The hotel is small, but modestly furnished and they like to emphasise the hearty meals. The plot centres around the hotelier, servants, guests and how their stories entwine. There's scandal, affairs, murder, manslaughter, robbery.....It's definitely worth a watch if you enjoy Upstairs and Downstairs or Downtown. Catch on All4

This makes me want to learn Danish, but they have more letters in their alphabet and the pronunciation is tough to copy.

Also this week I carried on with my sessions on MyTutor, especially with English Language descriptive writing. I think it will help me with my blog.

It was my parent’s 28th wedding anniversary and I was the only one to remember, my Mom and Dad forgot!

My brother is worrying if he’ll be able to get a flight back to Copenhagen to do his exams at university there. Has anyone got a row boat he can borrow, as this looks like it might be his best option?

My Dad noticed there still seems a lot of people out and about when he’s driving to work. He noticed a car with bikes attached to the back with a family in!

My oncologist Dr English rang to see how I was

He’s been off sick from work for a while. He is a really nice man and I’ve known him since I was 8 years old. When I was at primary school I used to write my questions down for him and I told him how school would moan about my handwriting. He said my writing was better than most of the doctors at Birmingham Children’s Hospital.

Lockdown Normality - 28th April 2020

Hello everyone, how’s your fifth week of lockdown been?

Most days for me feel long and repetitive. To keep myself entertained, I normally read books, watch tv shows and films in Spanish and I have to do the school work that is set for me.


The company where my dad works are now starting to produce face visors for free for the doctor’s surgery in the local area. The company also produces the testing kits for the Coronavirus pandemic.

On Thursday, I did my weekly business tutorial with my brother, Rhys. This week we did six mark answers, which was difficult because my business teacher at my school gave me three different ways to answer the question. When the time came to do the mocks, I struggled with this type of question. My brother showed me his way of answering the question and I finally started to get the marks!

On Sunday I carried on reading ‘Noughts and Crosses’

So far Callum, who is one of the main characters, hid a secret to his parents about his sister Lynette’s death. Further on in the novel both of the main characters (Callum and Sephy) witness a suicide attack. 

Earlier in the week, I rang the doctor because I was in pain and ibuprofen wasn’t helping me. The doctor prescribed me Gabapentin. While she was trying to send some information about the medication her computer kept playing up and she kept telling the computer off. It was really humorous listening to her telling the computer off. At the moment the medication is slowly working.

Reorganising School & Entertainment in Isolation - 21st April 2020

Hello everyone, how are you all doing?

On Tuesday I started using My Tutor Online School, which is a website giving free GCSE English, Maths (Foundation and Higher), Science and History lessons. This website is really helping me if I have to retake my exams. To be honest it’s helping to keep my mind active during the lockdown too. Firstly you have to sign up using this website:

After you sign up you will get emails each week saying what free lessons are available and telling you to use the Zoom app.

Using these lessons I have finally cracked venn diagrams, which I had found really difficult. The online tutors, who do the lessons, do one area of the subject at a time and you are able to ask questions if you want to. The tutors also take their time going through each area of the subject so everyone can understand the topic.

On Thursday Dad did the weekly shop and managed to get a few items for our neighbours Linda and Dave because they are classed as vulnerable. They have always been very supportive and kind to me and my family.

On Fridays my family do two ‘Non-Pub Pub quizzes’. One is organized by my cousin Ross Harris, who is an actor (you can search him up on Facebook). The second one is organised by an ex local radio presenter called Pete Morgan, If you want to join in search his Monkeypants Productions page on FB. This gives us something to do as a family and breaks up the boredom.

On Saturday my Mom made me watch a Hitchcock film called Strangers On A Train. The film is about two strangers who meet on a train but one of them is delusional and tries to make a deal where by he will kill the other man's wife if in return the other man kills his father. They have no connection, therefore no one would suspect.

I also watched ‘An Inspector Calls’, this film was both sad but also thought provoking. My Mom said my brother had to read this book for A level literature.

Easter in Isolation - 14th April 2020

Hi everyone. How was your Easter holiday?

Earlier this week I went for one of my daily walks and found another public footpath near my home and the views of where I live are magnificent. It went through some farm land and bricks had been partly buried to give you more grip going along it. You could see the horses grazing at the riding stables. I'm suffering a lot of NF pain, which doesn't seem to stop at all. I have to walk a few steps then stop. It would be easier to stop in, but I need some daylight.

On Wednesday I decided to eat an easter egg with my Mom because there is nothing to do and I am tired and bored of being in this lockdown. I wish this lockdown would end, because I feel that my mental health is deteriorating.

On Sunday I ate some Simnel cake, which is a traditional Easter cake.

After lunch I started reading a book called 'Noughts and Crosses', which is about an alternative history in which native Africans have colonised the European people. So far I am enjoying the novel.

I watched my NF nurse Mel and her daughter shave their heads to raise money for Nerve Tumours UK. Don't think I'd have the guts to do it, so well done them. 

Bradley is the son of my Mom's friend. This is what we have done on the Easter Weekend. Every Saturday he puts on a live music session on FB live. It's really good fun and he takes requests.  

We are family - 7th April 2020

Hi everyone, how are you doing?  My week was slightly better than last week.

Firstly my relationship with my parents is much better and we are not arguing.

When I go out on my daily walk, there are less people around and as a family we say hi or hello to anyone else who is out.

However, in some areas of London and some beach resorts there are still hundreds of people doing their daily walks. Most of them do not live 5 minutes drive away from these areas and this makes me angry and frustrated that they are not following the guidelines.

At the moment I am eating through boredom. Earlier this week I ate a whole Easter egg with my mum and dad within twenty minutes and can't find away to keep mentally and physically active.

However, on Sunday I found out one of my grandma's friends had died from Covid 19 and now all the retirement village she lives in have to self isolate.

I had some bad news of my own, I lost my great great aunt Joyce on my dad's side and she was 95. She died of old age.

Unfortunately due to Covid 19 we cannot attend the funeral, so we are all thinking of her close family.


At the moment I'm still worrying about how the exam boards are assessing my GCSE'S  because some teachers may have favourites and will give them the top grades.

Getting to terms - 30th March 2020

Hi everyone, how are you feeling this week about the Coronavirus? It has affected my mental health in an negative way by the end of the week.

On Tuesday I went food shopping, before the new government advice came out. It was slightly weird going out shopping because there was hardly anyone in the supermarket and some of the shelves are empty, the toilet roll aisle.

On Wednesday it was my 16th birthday and it was slightly boring because I couldn't do much because most of the shops have closed. I decided to watch movies on disney plus, which I had got for my birthday.

I loved the presents I did get a L'Occitane gift set, Pixi make up products, disney plus and money off family and my brother's girlfriend's family.

Hopefully when the shops are open I will hopefully buy a laptop for sixth form.

However, on Sunday my mental health took a slight turn. I got into an argument with my mom and dad. I argued about changing my mind if I wanted to go out for the daily walk that we have to do. They got angry at me and I got angry at them. I also said bad words to them and I wish I didn't because they are not speaking to me and they probably won't talk to me for a while.

Hopefully you didn't have a bad week like mine and I will write soon.

The Flu Jab - 24th March 2020

Everything is changing so fast and things are so uncertain.  I was supposed to have a GP appointment, but it had to be done over the telephone because of Covid19. I couldn’t have my flu jab either.

The telephone consultation was alright and she asked lots of questions, but she couldn’t deal with all my problems. My prescription was even sent electronically so I didn’t have to visit the surgery. It’s a scary time.

Then came the news about school closing till....well we don’t really know when. Plus, I’m in year 11 and so can’t even take my GCSE’S. I’m concerned how they will assess by grades, as I’ve improved a lot since my mocks. I just hope they are fair.

Last day at school was very emotional, as I might not see any of my school friends again

We are all going to different 6th forms, apprenticeships, colleges etc. We don’t even get to go to prom, my dress might not ever get worn. It’s all so very sad

I think it’s going to be a long and boring summer, I’m going to keep studying just so I don’t fall behind.

It’s my birthday soon first time we are really restricted about going or doing anything.

Keep well everyone and remember....wash your hands. Stay tuned! 

Why not join our private Nerve Tumours UK Teen group a great place to talk amongst yourselves, swap stories and ask questions amongst each other. 

Filter News

Filter by Date

Today is Giving Tuesday

Call out by Karen Cockburn, Charity Director, to donate and support the NF Community

Read More

Runderpants fun run

Get your Runderpants here! Set up a fun run wearing some special fundraising pants

Read More

Avastin Side Effects

Jo highlights Avastin side effects, from experience of her son Oscar's treatments, plus shared testimonies from others

Read More

Olivia’s NF1 story

Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses

Read More

2023 Awareness Campaign

Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.

Read More

Disclosing and explaining visible differences - CAR Workshop

Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebeca Rennison

Read More

Jo Ward’s Avastin Blog

Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey

Read More

World Mental Health Day 2023

NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services

Read More

CAR Research visible difference experiences during recruitment

Research participants required, find out more and take part

Read More

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière , Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca.

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK