'I don't want any other family to go through this'

Shareen Elnagy wants to highlight the early symptoms of encephalitis to help others seek a speedy diagnosis

A woman whose mum died after battling little-known brain infection encephalitis for three years is raising awareness of the symptoms to look out for.

Shareen Elnagy, 34, from Bristol, said her mum initially experienced symptoms including sickness and nausea on 14 October 2021, with neck and shoulder pain that got worse over a couple of days.

Ms Elnagy said by the time her mum was diagnosed and treated, the infection was a "lot worse" and she died in September last year.

Encephalitis can be a viral or bacterial infection and causes brain inflammation and swelling, and affects about 4,000 people in the UK each year, with a national awareness day held annually on 22 February.

Ms Elnagy says she misses being able to see her mum or just picking up the phone and chatting with her

Ms Elnagy said her mum developed a rash early on in her symptoms, and was showing signs of delirium, was unable to move easily and lost her appetite.

Her sister took their mum to hospital where she was given pain relief and sent home.

"In just a few days from her first symptoms, mum went from being happy and healthy to losing her appetite, experiencing confusion and collapsing on the bathroom floor."

Paramedics were called and the family pointed out the rash, which had spread up her arm, neck and all up her back, and she said hospital staff were also made aware but claims it was not noted.

Blisters began appearing within the rash, which started out as red and patchy, and became itchy and painful. Her mum also complained of tremors down her arm and neck, she said.

"All the symptoms of shingles were there, and mum's delirium got worse, with her in and out of consciousness. Essentially she was fading away," she added.

Ms Elnagy said the shingles infection, which comes from the same virus that causes chicken pox, herpes zoster, eventually went to her mum's brain and that caused the encephalitis swelling.

"She caught viral encephalitis from the same virus which causes chicken pox," Ms Elnagy added.

Ms Elnagy says she does not want any other family to go through what they have

"The skull stops the brain from expanding and that's when the brain injury happens. The aftermath of that is pretty devastating," she said.

"Unfortunately, viral encephalitis can affect anyone and some are more vulnerable than others, if you're elderly or very young."

After learning of the harm in delays to a diagnosis, Ms Elnagy says she wants people to know the signs to look out for, because the "earlier it is diagnosed and treated, the better the outcomes", she added.

"Mum loved shopping and buying presents for everyone and would mooch around the car boot sale for presents or just to socialise.

"And she loved having competitions with my dad about how many steps they would take in a day and compare their fitness."

However, she went from that to a seven-month hospital stay, contracting a fungal blood infection from where a feed tube went into her, and also lost her hearing.

Encephalitis is a condition that affects about 4,000 people in the UK each year

The family tried to help communicate for her but, owing to a spike in Covid-19 cases, they say her mum had to be moved around as wards became used for coronavirus patients.

"This meant starting again each time with [a different] doctor, so we would try to be there as much as possible," Ms Elnagy said.

Her mum was unable to eat properly or take in solid food and had to be treated for pneumonia, which would develop into sepsis, she said.

"Every time mum went into hospital she had a setback."

Her mum died a week and a bit after her birthday in September last year.

"Everyone fell in love with mum, she was so kind, and never lost that throughout her treatment. It just breaks my heart she had to go through this," Ms Elnagy said.

"I miss meeting up with her or just picking up the phone and talking to her. She always gave great advice and was the best mum."

Ms Elnagy wants people to understand the urgent need for medical attention and early diagnosis so no other family has to go through the same thing.

"Know what to look out for. So if someone is showing signs of delirium, if they are acting out of character, if they've got a fever or a rash and suddenly something starts going wrong in their mind and in their head, just act quickly.

"Get seen, get scans, get the lumbar puncture done," she added.

"That's all that is needed to diagnose encephalitis as early as possible and get on the right treatment," she added.

What are the symptoms of encephalitis?

Encephalitis usually starts off with flu-like symptoms, such as a high temperature and headache.

More serious symptoms come on over hours, days or weeks, including:

• Confusion or disorientation

• Seizures or fits

• Changes in personality and behaviour

• Difficulty speaking

• Weakness or loss of movement in some parts of the body

• Loss of consciousness

Dial 999 for an ambulance immediately if you or someone else has these serious symptoms.

Source: NHS