A Lincoln woman tells us about her misdiagnosis and survival of a brain disease
Encephalitis is an uncommon but serious condition in which the brain becomes inflamed. We hear about the misdiagnosis and personal experience from a Lincoln woman who has survived the disease
Last updated 29th Nov 2023
Hoping to raise awareness of an illness that affects the brain, a Lincoln woman is sharing her experience of misdiagnosis and mistreatment.
Encephalitis affects one person every minute globally, and is a serious medical condition caused by inflammation of the brain.
Lucy Dawson was mistakenly taken to a psychiatric ward for four months before she was eventually diagnosed the disease.
She tells us more about her battle with the illness:
"I think just even knowing that as a survivor, that's the first time I've heard it A link between mental health and encephalitis. It helps you realize that in those really dark times after the illness, as well as during it, that you're not alone in that.
"For me, everything changed. Part of that was grieving the person I was before my illness, and then also coming to terms with, having a physical disability because of a brain injury.
It's impossible to adjust correctly to that kind of thing, you know, and it definitely was for me.
"There were years where I really didn't think that there was any way out of the card that had been dealt basically.
"I think another thing that's so important in survivors sharing their story is the part where we do keep going, and you know, there is always a light somewhere.
"You know, I can remember saying to my grandparents, why did I have to ever wake up and things like and I genuinely, genuinely meant them at the time, and so to know that is quite a common affect of encephalitis; I guess it it makes you feel less alone and also that your thoughts and feelings are valid."
On World Encephalitis Day (22nd Feb) two new reports were published to highlight the link between patients who have suffered from the condition and adverse mental health.
In one survey by the Encephalitis Society found up to 37.5% of survivors of the condition reported they had thought about or attempted suicide (4.4%). In a further survey 12.5% of patients affected by an autoimmune form of the condition had suicidal behaviours during early stages of the illness with nearly half of those patients (5.83%) carrying out a suicide attempt.
Encephalitis stems from an inflammation of the brain and is caused either by an infection invading the brain or through the immune system attacking the brain in error.
The condition affects one person every minute globally, yet almost three quarters of people (77%) don’t know what encephalitis is and what the symptoms are. This lack of awareness leads to delays in diagnosis, treatment, and poorer outcomes for patients.
To combat the lack of knowledge about the illness, World Encephalitis Day, which is now in its 10th year, aims to raise awareness of the risk of mental health issues during and after encephalitis and encourage health professionals to ask about and risk assess for these issues during all stages of treatment for encephalitis.
Dr Ava Easton, CEO of the Encephalitis Society and co-author of both reports, shares why swift diagnosis and treatment, along with careful risk assessment during encephalitis, can reduce suicidal thoughts and how the Encephalitis Society can help support those who suffer from the condition:
"Well, these are all conditions that have much higher clinical and public profiles. Yet despite encephalitis affecting one person every minute around the world, nearly eight out of 10 people still don't know what it is, and that brings us back, I think, to why this campaign is so important.
"We're releasing for World Encephalitis Day, two ground breaking papers that talk about mental health and, in particular, suicide associated with these patients, both during the time when they're very poorly in hospital but also later on, after they've been discharged and the impact of the condition on people.
"Our campaign this year had to be dedicated to raising awareness of that and in particular calling for two things, calling for health professionals to ask about and to risk assess for mental health issues at all stages of encephalitis, from the point where people are poorly, through to being back in their community, but also perhaps more importantly for anyone affected by mental health problems and encephalitis, that they know that the symptoms are often highly treatable and that help and support is available."
Symptoms of the disease can vary, especially between which type of illness someone has.
Infectious encephalitis usually begins with a ‘flu-like illness’ or headache.
Typically more serious symptoms follow hours to days, or sometimes weeks later. The most serious finding is an alteration in the level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness and coma. Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness or uncharacteristic behaviour.
Autoimmune encephalitis often has a longer onset. Symptoms will vary depending on the type of encephalitis related antibody but may include: confusion, altered personality or behaviour, psychosis, movement disorders, seizures, hallucinations, memory loss, or sleep disturbances.
To find out more, use the Encephalitis Society page.