Stories

Hannah

Hannah’s Story

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My dad was always a fun sort of guy, always loved a party and being social and a good drink! Always liked to make sure everyone was enjoying themselves. He was adventurous and did what he wanted when he wanted. Travelled the world.

When we were quite young, he noticed he was losing his hearing. My uncle suggested he get things checked out and it was eventually found he had a condition called Neurofibromatosis type 2 (NF2). They said he had a large tumour on each if his hearing nerves called vestibular schwannomas and would need them removed. The larger one was taken first, and he went deaf in that ear and because of the size his facial nerve was also affected.

He had to wear an eye patch as his eye wouldn’t close properly at first. He didn’t want to kiss my mum anymore and hated how he looked. He then had the 2nd tumour removed and went completely deaf. My dad didn’t cope well with this and not being able to hear his friends or his children. His balance was also affected and although his face did recover a little it was never the same.

I believe that things may not have ended how they did if it wasn’t for NF2. I don’t claim my dad to be a saint, but I know how I struggle now, and I think it would be a lot for anyone to cope with at a still relatively young age. So far, I’ve had yearly MRIs since I was 14. Countless injections, bloods taken, eye, ear tests.

Hormone treatments more needles… and now finally Avastin treatment so I can keep my tumours small so I can keep my hearing for a bit longer. Avastin makes me tired and sick but it’s better than the alternative.

Olivia
tumour

Olivia and her story

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Hi my name is Olivia I’m 20 and I live in Surrey in England.

I’m really active – I horse ride, my job is an equestrian groom, so I ride and care for horses every day and I love it. I was born to be outside with animals.

I’m part of a netball club and play in a league, I jet ski, walk my dog, party and have a huge appetite for life!

When I was 15 I had a clinic visit as I had inherited NF2 from my Dad. The consultant was reluctant to give me a brain MRI scan as I presented so well, looked healthy and had no symptoms. Something in me wanted to see what was happening in my brain and I didn’t want to wait any longer and ask for a scan to be booked in. Very reluctantly the consultant agreed and I had the scan.

The scan of my brain revealed a tumour the size of an orange in the right frontal lobe part of my brain. It’s called an ependymoma. If you are not familiar with scan pictures, the fluffy clouds are the tumour and the black space is it’s sack or fluid filled cyst. I could not believe what I was seeing and how I was still moving around ok. Emergency brain surgery followed just over a week later. They had to shave some of my hair off and following the operation I was very high risk of a life time of seizures amongst a whole list of complications from the surgery

The scan revealed 4 brain tumours, the ependymoma, an optic nerve meningioma and 2 further vestibular schwannomas on my hearing nerves. Within 18 months I’d had 3 brain surgeries and was blind in my right eye. On returning home after one very painful surgery I noticed a liquid dripping out of my nose. It was a CSF leak which is the fluid that surrounds my brain and I had to go back in. That really was a low point. I had a further 7 days after surgery on a drain, to manage the pressure of the fluid around my brain to allow for healing. I missed my GCSE’s, the leavers parties and so much more at a time when all my friends were moving on except for me. I suffer with PTSD and I have no idea what is around the corner for me with this condition and I try to manage my mental heath the best I can from day to day.

Gene Therapy offers me hope that the clock can be stopped on this time bomb in my body and that I can keep the senses I have left and my mobility. The work that NF2 BioSolutions UK is doing has inspired me to speak about my experience with NF2 and to raise awareness of the condition. My understanding is that the NF2 gene is a good candidate for gene therapy and this gives me a great focus and outlook for my future.

Joanne
Oscar

Joanne and Oscar’s story

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My name is Jo Ward, I was diagnosed in Sept 1999, aged 29.  I still remember the day as clear as it was yesterday. No-one was sure I was going to make those millennium celebrations!

Up until that point, I had a few episodes of losing my balance and my hearing had deteriorated a little by the time I went to the doctors and MRi scans revealed bilateral vestibula schwannomas. Surgery was scheduled for 5 days time when they removed the right sided tumour which left me deaf on that side with facial palsy. I had severe dry eye problems which resulted in an extra hospital stay.

The left side remained stable and I learnt sign language and got life back together. Any remaining hearing on the left side lasted only a few years until 2005.

My first born arrived in 2007, and the doctors decided that a debulk of the left VS would be a good idea, so in 2008, life got put on hold once again for a few months while they did that.

My 2nd son came along in 2011 and after that I decided to have facial reconstruction surgery to sort out the facial palsy and it worked out very well, I was very pleased with the results.

2013, I amazed myself by learning to Ski, its probably, besides the boys, my greatest achievement.

Although the left VS remained stable it was growing very very slowly but not enough to worry about, I tried a cochlear implant in 2015, but it didn’t work for me, so they took it out again and I remained deaf.

Scans in 2017 revealed it was probably time again to do something about the left VS so I had gamma knife on it to try halt the growth, at the same time I was told I have a 1.5cm frontal lobe meningioma so given the option it was treated with gamma at the same time.

Presently, the left VS and meningioma are stable but last MRI I was told I have a 1.9cm parafalcine meningioma, but there are no plans to do anything yet just watch and wait. I have a few spinal tumours that are stable, one is particularly big but not causing problems, the others have remained stable since diagnosis. I have cataracts in both eyes.

As a family we love to travel and we have a caravan at the seaside which we go to as much as we can. And all the boys love their football.

Despite it all, we are a team, we raise awareness of NF2 issues and are actively part of the NF2 BioSolutions UK charity team, where I am Chief Operations Officer, raising funds and awareness both locally and nationally and we will fight passionately until we get a cure. My husband Pete and our eldest Son Dylan help with raising awareness & funds whenever they can and are right beside us fighting NF2.

Oscar story

Oscar is 10 and inherited NF2 from his mum Jo, he was diagnosed around 2016, he has a juvenile cataract in his left eye and a very low level hearing loss. He is an NF2 warrior and born a fighter.

MRi scans show he has bilateral vestibular schwannomas and a frontal lobe meningioma. He has 4 spinal tumours, one of which is causing mobility problems in his left leg where his peroneal nerve does not work sufficiently well causing foot drop, club foot and muscle atrophy. He tries to keep as active as possible though and plays football competitively for a local team which hes really proud of and his favourite subject at school is PE.

We are under a great consultancy team (shared between Addenbrookes, Royal National Orthopedic and Queens Medical Centre) There is going to come a time in the not-too-distant future where he will need surgery to correct his foot problems.

His bilateral tumours are also causing some concerns and may need intervention sooner rather than later.

Oscar would love to appear on BBC Children in Need to raise more awareness. He loves all things Lego, Star Wars, Xbox and Minecraft.

 

Hellen

Hellen’s Story

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Angela is from the Netherlands and tells the story here of her daughter Hellan

The monster

Our youngest daughter Hellen had, from the age of 4, always nightmares about a monster. Nobody, but herself, could see the monster, but she saw it staring at her, from under a carpet or she felt it pulling her under water. Not that special for a child that age, but the dreams were often repetitive and become more and more obscure when she got a few years older. Dark and often complete incomprehensible for a child doing well in school, having lots of friends and a great sense of humour. 

She woke up, crying, couldn’t or wouldn’t talk about them most of the time and that’s why I let her make paintings of her dreams, because I had read somewhere that that maybe could be of any help. 

But then, nine years old, she was diagnosed with NF2. The nightmares disappeared and I forgot all about her paintings. I found them until after she died. Now I could understand them, as if she anticipated on her future ordeal. 

The NF2 story started when she had some problems in school looking at the blackboard. 

One thing led to another and after the first MRI in that year, she had numerous follow ups, (more than 30) is seen by a lot of doctors, some of them a little bit too eager to touch the little red painful bumps, at that age the only visible exterior feature of NF2. It looked like a bit of: Come, see and learn! We have here a case of NF2. 

Very inconsiderate for a children’s hospital… she was just a little girl and wasn’t aware of the burden of NF2 yet. At some point she stood up for herself and said: No, stop, I don’t want any other doctor to look at me. 

All the investigations in that first year showed that she had tumours in her head, the famous ones, the bilateral acoustic neuromas, tumours on the nerves of her eyes, her facial nerves, several in her spine, and something that is called in Dutch: strings of pearls (of little tumours) in the lowest part of her spine. 

But as she grew older, it became clear NF2 was all over her nerve system. Arms, fingers, legs, feet, belly. 

The hospital 

Endless corridors in the hospital and behind every door without a window, something or somebody ‘unknown’, to be scared of. She felt ‘lost’ and alone, although we, her parents were always with her. But that was a part of the problem too, everybody talked about her, in her presence, with us…. not with her. 

Deafness

Hellen walks in a soundproof bell jar, separated from the world she knew. 

Overwhelmed

When she was 10 years old, she had her first acoustic neuroma surgery. When she was 12, her second acoustic neuroma surgery and because both times the result was very disappointing, she needed stereotactic radiation therapy, to try to stop both tumours from growing. 

Every weekday for 6 weeks long, with her head fixated on the table she was left alone for a few minutes, while the machine did what it had to do. Within a few weeks after the last session, she was completely deaf. 

Overwhelmed by all the hospital events, no longer being able to attend her old school because of her deafness, lost her friends because of her deafness, all that made her a sad and lonely girl. 

No longer bright light from sun, moon or stars… 

Lonely 

She hated her life and her body, especially her face with her crossed eyes, because of a paralysed eye nerve. I caught her once, standing in front of the mirror, saying: how ugly you are.

She no longer wanted to live. 

It took her a long time, but she finally discovered her reason to live, her passion: she wanted to become a teacher for deaf children, especially for the little ones on a pre-school. From that moment on, the depression disappeared into the background, but it never completely vanished. 

Depression 

Painting

When our dog died, the dog was only seven years old and Hellen at that time 9 years, she was of course very sad. But then she had a beautiful dream. 

Hellen explained: I’m sitting here with Narda, watching a beautiful sunset at sea. (The two other figures are mum and dad waving) Narda says: ‘You don’t have to worry, I’m good’, and Narda rubs with her foot some sand on my cheek, it hurts a little but that’s okay. I now know Narda is fine. 

That dream was of great consolation to Hellen.  That’s exactly how we feel after Hellen died. As if she also says: ‘Don’t worry, I’m good’.  And we? It hurts, realising our beautiful and brave daughter is no longer among us. But that’s okay. 

That’s love too, it can hurt. 

Deborah

Deborah’s Story

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Hi my name is Deborah, I’m Originally from England, and I’ve lived in Scotland with my Husband and daughter for the past 23 years (previously I lived in England, North Wales and South of France, so lived in many places).

I was diagnosed with Neurofibromatosis Type 2 when I was 19.  I had several dizzy episodes when I was in my teens and I had several blood tests which all came back negative. 

My Mum, who is no longer alive, had NF2 and she had a serious operation on her head to remove one of her large tumours.  This left her deaf and her mouth was to the side and one of her eyes was damaged.  I was 13 when she had the operation and was in complete shock when I saw her.  We were told that it was a 50/50 chance that it could be passed on to me.  So my Dad pushed for an MRI scan for me even though the GP didn’t think I’d have it. 

In September 2005 I received the dreaded phone call.  I was asked to come to see the GP for my scan results urgently.  Once I received the news that I had 2 tumours either side of my head, like my Mum, I broke down.  The GP tried to reassure me that I wouldn’t end up like my Mum.  Being 19 I thought I’d end up with my hair shaved, being deaf and not have a good quality of life like my Mum. 

I was living at home with my parents at the time and had to go to Liverpool hospital to see a consultant called Mr Foy and the ENT specialist.  I was due to go to Avignon, South of France, as an Au Pair the following month.  Both consultants advised me to consider my diagnosis and forget about going to France.  I was distraught once they said this.  They didn’t know much about NF2, with it being rare, and they didn’t know how it would affect me. 

I went to France 2 months after once I was told that I could get on with my life and it was going to be a wait and see basis (I’d get an MRI scan each year and as long as they didn’t grow or affect me we’d just wait and see). 

After 3 months I went back home from France to get Gamma Knife treatment at Sheffield on my left side tumour.  Unfortunately this left me deaf on my left side.  I also get Neuralgia on my left side due to having this treatment. 

I have been fortunate that I’ve not had to have an operation yet.  But now that I’m in my 40’s (in my family they tend to grow in your 40’s) my right side (which is my good side) has started growing.    I’m currently on Avastin treatment at The Beatston Glasgow which I started in October last year. Hopefully the treatment works but won’t know until my next MRI scan in 6 months time.  I’ve lost balance in both sides of my ears and if I don’t sleep well, which is on a regular basis due to other health issues, I end up constantly bumping into things.   

Unfortunately my nearly 15 year old daughter has NF2 as well.  She has to go for yearly MRI scans and her hearing, thankfully, is ok at the moment. 

This is an awful genetic disease that affects everyone’s life’s both those that have it and their families.  NF2 Biosolutions is looking very positive for the future though.

Nicole

Nicole’s Story

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I was diagnosed with NF2 when I was 16 years old. Although I have been hard of hearing since I was 6 and always had bad balance issues.
Unfortunately when diagnosed my right sided acoustic neuroma was 4.2cm therefore the only option was surgery. I underwent 12.5 hour brain surgery in Glasgow when I was 16 and had to miss 1 year of school. I was left completely deaf in my right ear and had facial palsy. I now have a gold weight in my eye. I still to this date 12 years later suffer dry eye issues. I wear a hearing aid in my left ear.
I then returned to school and sat my exams, to then further study at university to become a nurse.
Shortly after becoming a nurse I then had to get surgery to remove a tumour from C8 nerve on my spine as I was experiencing a lot of pain down my right arm. I was in a sling for 8 weeks.
I have had a few smaller operations to remove neurofibroma from my foot, several eye surgeries, and nose surgeries as I suffer a lot of nosebleeds due to facial palsy.
I recently underwent 6 months of Avastin treatment as I had 4 tumours on my thoracic spine causing pain down my legs and hips. Unfortunately the treatment wasn’t successful and 1 of the tumours suddenly hit the spinal cord and I had to get emergency spinal surgery to remove all 4 tumours.

I am the first person in my family to have this condition.
I get yearly MRI scans to monitor my left acoustic neuroma, 4 meningiomas and several spinal tumours.

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