A North Belfast teenager who spent much of her life struggling with the symptoms of an undiagnosed brain tumour is now raising awareness of the signs of the disease.
Amber Hanna was suffering with severe headaches and fatigue for around six years, with the pain often unbearable. When she went to the GP with her mum after being sick regularly, Amber's symptoms were put down to stress.
The 18-year-old's mum Daniella said looking back, she wish she had of pushed for scans, but that she put her trust in the medical experts and their advice. "I didn’t know anything about brain tumours at all so I had no idea about what could be making her so unwell. As time went on, we were increasingly concerned about what it could be," she said.
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One night, Amber was very sleepy, slurring her speech and vomiting so Daniella called an ambulance. She was taken to hospital where an MRI scan found the Choroid plexus papilloma brain tumour.
She had a series of operations to drain the fluid in her brain and remove as much of the tumour as possible and her condition is now monitored with regular scans, which have since been stable. Amber has also been diagnosed with Epilepsy and takes anti-seizure medication to control it but she says this really impacts on her mental health too.
"I knew in myself that something was wrong," Amber said.
"But I had never even heard of a brain tumour though so I didn’t know what could be happening. I definitely didn’t know that brain tumours are quite as common as they actually are.
"As I gradually found out more, I was both worried about what the diagnosis meant as well as relieved that I finally had an answer to what had been happening to me. I really think that campaigns like ‘Better Safe Than Tumour’ are really needed.
"Brain tumours can be deadly and so many people don’t know about them and not enough research is done into them. I think if there were more awareness about the disease then people like me would have seen the signs coming and we would have been empowered to do something about it before I nearly lost my life to it."
The Belfast woman is now supporting a new flagship campaign from The Brain Tumour Charity to raise awareness of the signs and symptoms of the disease in children and adults.
Amber is championing The Brain Tumour Charity’s new ”Better Safe than Tumour” campaign which was launched this month. The campaign aims to support the public – whether adults, children, parents, partners or friends – to be aware of the possible signs and symptoms and to get any concerning or persistent symptoms checked out by a doctor.
In adults, this includes persistent or severe headaches which may be worse in the morning, changes to vision including blurs and double vision, tiredness, nausea, speech difficulties and seizures in adults. In children, symptoms may also include balance, co-ordination or walking problems, loss of taste and smell, abnormal head position, regular sickness, especially in the morning and excessive thirst.
The Brain Tumour Charity’s campaign launches as analysis of NHS cancer incidence data shows that the number of people who have been diagnosed with a brain tumour in England has risen by over 50% in the last two decades (2001-2019). Experts believe the increase in cases in recent years could be explained by the ageing of the population and advances in detection and clinical practice – including the adoption of new diagnostic and imaging tools, molecular testing, new surgical techniques and improved classification and data collection.
In addition, around 40% of cases are still diagnosed in A&E and there was an increase in emergency presentations seen in 2020 due to the pandemic. It is hoped that the campaign will support more people to recognise the symptoms and visit their GP to rule out brain tumour, and help ensure those who do have a brain tumour can be diagnosed and receive the care and support they need at the earliest opportunity.
Dr David Jenkinson, Chief Scientific Officer at The Brain Tumour Charity, said: "We’re really grateful to Amber for supporting The Brain Tumour Charity’s ‘Better Safe Than Tumour’ campaign by sharing their story to highlight just why we need to raise more awareness of the disease. These worrying figures show how urgently we need to act on this.
"While brain tumours remain relatively rare, incidence has continued to rise significantly over the last two decades, and this has unfortunately not yet been matched by the tangible progress in diagnosis, treatment and survival outcomes seen in many other cancers.
“With over 12,000 people now being diagnosed every year in the UK, and the impacts on diagnosis seen due to the pandemic, renewed action to support more people to recognise the signs and come forward to see an NHS doctor has never been more needed. “We absolutely want to reassure people, that despite this increase in cases, brain tumours are still uncommon.
"But it’s so important that we see greater awareness of the signs and symptoms of the disease to ensure anyone affected can get the diagnosis, treatment and support they need at the earliest opportunity.
“The warning signs vary by age group, as well as due to the type of tumour and where in the brain it is located. We’d encourage anyone who is worried about a symptom that’s unusual for them, and particularly if it is persistent or they experience a combination of symptoms, to speak to their doctor – to help rule a brain tumour out.
"Anyone concerned can also speak to us on 0808 800 0004 or find out more about the possible signs and symptoms at headsmart.org.uk. We’re here for you."
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