Suffolk teacher wants more awareness about Encephalitis after "challenging and frightening year"
Misdiagnosis, seizures and Christmas in Hospital - Freya Le Serve is spreading awareness about Encephalitis.
Last updated 22nd Feb 2022
A Suffolk teacher is marking World Encephalitis Day today - by trying to raise awareness about the condition which left her in hospital.
Freya La Serve was diagnosed with the back in 2019.
Encephalitis is an inflammation of the active tissues of the brain caused by an infection or an autoimmune response. This can lead to fatigue, headache, stiff neck, sensitivity to light, mental confusion, memory issues and seizures.
According to the Encephalitis Society, there are up to 6,000 cases in the UK each year and potentially hundreds of thousands worldwide.
In September 2019, Freya entered the teaching profession and after a few weeks she started to feel "a number of signs suggesting that something wasn’t quite right "
She "had been having headaches for a while, was extremely tired, up and down with my emotions and very clumsy."
However, there are teachers within Freya's family and they all concluded these symptoms were just symptoms of stress from starting a new, busy and stressful job as a newly qualified teacher.
This began Freya's "most challenging and frightening year" of her life.
In the early hours of Saturday morning (the 8th). Freya's boyfriend called an ambulance. Freya had a seizure during the night and had been unconscious for a while. When she awoke, her boyfriend told her but she had no memory of it happening.
The next thing she remembers is a paramedic sitting on our bed telling her that everything was going to be OK.
The next morning she was taken to A&E, the hospital staff reassured her having one seizure is nothing to worry about, but that it was uncommon for someone in their 20's. So she was discharged and went home.
After midnight Freya had another clonic seizure. After going back to the hospital in an ambulance, she was diagnosed with Epilepsy and received medication to help.
Freya reveals "In the early hours of Friday, the 13th Dec I woke in a hospital bed with my Mum & Dad by my side. They explained I had had another four tonic clonic seizures, one after the other.
"Apparently, I didn’t recover from one seizure before the next one started." She awoke, just before going into intensive care."
Her symptoms began to worsen.
"That evening on the ward in the Queen Elizabeth Hospital - Kings Lynn (QEH), I had a terrifying time with paranoia and hallucinations. I thought that all the staff in the hospital and my family were against me and trying to hurt me.
"I wouldn’t take my tablets, I refused to do everything that they needed me to do to make me better. I could see the blue curtains surrounding me on fire and I was desperate to get out. This lasted around 36 hours."
She had multiple tests to help produce a diagnosis, including "a CT scan, an MRI, EEG and a spinal tap" This is when she was told she "had Autoimmune Encephalitis "
The treatment for this involved five consecutive days of Plasma Exchange. Meaning she spent Christmas and Boxing Day (her birthday) in Hospital.
She was discharged on the 27th, with a "long list of medication I had to take"
But Freya, was still struggling.
"I was extremely tired yet found sleeping difficult. I couldn’t focus on any television programmes or read any books and this had been the case throughout my hospital stay also."
"My recovery started slowly as well as my walking! I could hardly walk out of hospital on the 27th and for a few months after I couldn’t walk in a straight line. I built my walking up and it gradually got better but my balance was also a problem.
"I found it impossible to concentrate on anything and sometimes wondered if I would get back to normal. The medication didn’t help as it did make me feel like I was having 10 vodka shots all the time! As I slowly came off my medication I did start to feel better. I completely stopped my medication on the 29th July."
Autoimmune Encephalitis can be caused by a specific antibody. Freya was fortunate as all of her tests came back negative, meaning she doesn't have to take medication everyday to manage.
Since her diagnosis, a few things have changed, she had to give up her driving licence for a year, but has since got it back. She is now 12 months seizure free.
She described her memory as "weird" - being able to remember odd things like the ice cream shop her and her family went to on holiday 2 years ago, but not the long walk they did.
She also said she speaks quicker, and has to be conscious of this when teaching.
In order to raise awareness Freya is training for the Brighton Marathon on Sunday, 10th April, 2022.
She is raising money for the Encephalitis Society and also doing a day where she doesn't sit down at all, while teaching. You can find her JustGiving page here.