One person every minute is affected by encephalitis around the world, yet 77% of people still don’t know what encephalitis is. Dr Ava Easton, Chief Executive, The Encephalitis Society, explains the causes, symptoms, treatments, and why it is necessary to talk about the disease, in an exclusive interaction
Why is it important to talk about Encephalitis? What’s the severity of this disease?
Encephalitis is an inflammation of the brain that can occur at any age, in any part of the world and is caused either by infection, usually viral, or by a person’s own immune system going wrong.There are over 5,00,000 reported cases of encephalitis around the world each year with mortality up to 40% depending on the cause.
One person every minute is affected by encephalitis around the world, yet 77% of people still don’t know what encephalitis is. The UK paper, British Medical Journal, titled ‘Mental health outcomes of encephalitis’, an international web-based study, published earlier this month, surveyed 445 respondents from 31 countries and found that 37.5% of survivors of Encephalitis reported they had thought about or attempted suicide.
Apart from it, The Mexican paper ‘Suicidal thoughts and behaviors in Anti-Nmdar Encephalitis: Psychopathological features and clinical outcomes’ published in the Journal of Neuropsychiatry and Clinical Neurosciences, gained data from 120 patients and found that 12.5% of patients had suicidal behaviours during early stages of the illness with nearly half carrying out a suicide attempt.
The long-term consequences of encephalitis can be devastating. There can be a high mortality (death) rate associated with the condition.
Survivors can be left with an acquired brain injury resulting in a wide range of difficulties such as problems with memory and other cognitive skills, changes in personality, emotional and behavioural difficulties, epilepsy, fatigue and other physical difficulties which can make return to communities, education and occupation very challenging. To complicate matters, an injured brain is not visible, and, so, people’s difficulties are mostly hidden.
Tell us about its causes.
It is caused either by an infection invading the brain (this can be ordinary everyday infections that people will be familiar with such as Covid-19, measles or the cold-sore virus) or through the immune system attacking the brain in error. It is an often-devastating neurological condition.
What is the current burden of this disease in India? Where does the country stand in comparison to the rest of the world?
The global burden of neurological disorders published in 2021 estimates neuroinfections (diseases affecting a person’s nervous system) as nearly the third most common neurological disorder affecting 11.2% population preceded by stroke (37.9%), headache (17.5%) and epilepsy or fits (11.3%). In 2019, the incidence of encephalitis was 6,10,000 with an estimated 51,900 deaths per year, while that of meningitis (an infection and inflammation of the fluid and membranes surrounding the brain and spinal cord. These membranes are called meninges) was 5,52,000 incidence and 34,700 deaths per year. Encephalitis was most commonly observed in Tamil Nadu followed by Odisha and Andhra Pradesh, while meningitis is commonly observed in Uttar Pradesh and MadhyaPradesh.
What treatment is available for encephalitis at the moment? If there is not any, are scientists and doctors working on finding one?
Recently, improvements in diagnosis and treatments have taken place and these can contribute massively to reduce mortality and morbidity. Unfortunately, these technologies are not always widely available, especially in low to middle income countries.
Technologies such as antibody testing to diagnose autoimmune encephalitis, PCR testing (a medical test employing the polymerase chain reaction technique, frequently used to detect small quantities of DNA specific to a pathogenic agent in blood or other body fluid), CSF testing to diagnose infectious encephalitis or Positron Emission Tomography (PET) scans which can look for tumours that can be a trigger for autoimmune encephalitis, are all routine in some centres and still a “dream” for other centres.
The situation is similar for other newer technologies such as metagenomic next generation sequencing testing, a new diagnosis tool that can hugely improve finding the cause of encephalitis as it can test against many potential infectious causes, and, although quite efficient, it is often only used in big research centres.
Similarly, sometimes, a simple anti-viral treatment for some causes of encephalitis which can reduce hugely mortality for herpes simplex encephalitis, like acyclovir (an anti-viral drug used chiefly in the treatment of herpes and AIDS), is not available.
We are eagerly anticipating new research, expected to be released this year, for herpes simplex encephalitis which is trialling a new drug called Dexamethasone, to hopefully improve the consequences of the condition.
Are there any ways to prevent encephalitis?
Some of the infectious types can be tackled by vaccination, and/or preventive measures against the mode of transmission e.g., mosquitoes. Prevention of outbreaks of infectious encephalitis can include: improved vaccinations programmes; awareness of availability and the need for vaccination (if you live or travel in an endemic area); awareness of encephalitis, but also its severe outcomes, if it happens; awareness and availability of preventive measures such as insect repellents and environmental controls; infectious agents control and monitoring measures and programmes at local and national level and education for the general public.
What steps are you taking to make people aware about this disease, and helping those who have already been affected?
The Encephalitis Society works hard to raise awareness about encephalitis around the world and provides support and research to those affected by the disease, as well as those professionals supporting them.
Last year, our support services helped more than 300,000 people affected by encephalitis. Further, since its inception in 2014, World Encephalitis Day has reached 294 million people.
In addition, Encephalitis Society leads the World Encephalitis Day on February 22 every year, and urges people to wear red on the day and use #Red4WED on social media to find out more and get involved.
In order to shine a light on this important global topic, famous landmarks and buildings around the world have agreed to light up in red for World Encephalitis Day. Pledges include State Assembly building, Mental Health and Neuroscience Instituteand XCyton building in Bengaluru, the Christian Medical College (CMC) main campus and Ranipet campus in Vellore, along with Niagara Falls, the Jet D’Eau in Geneva, Piccadilly Circus in London, The Optus Stadium in Perth, and the Dancing House in Prague.
Are any governments around the world working towards the prevention of this disease?
Following the publication of our 180-page report entitled Encephalitis: an in-depth review and gap analysis of key variables affecting global disease burden, in May 2022, the Encephalitis Society is currently in the early stages of working with a range of global stakeholders including the World Health Organization (WHO), to discuss and drive forward work that we hope, in years to come, will change the landscape of encephalitis around the world.
What’s WHO’s take on encephalitis?
In line with their Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, WHO will release a meeting report on Why Encephalitis Matters on February 25.
Can the disease lead to any further chronic ailments?
Survivors can be left with an acquired brain injury resulting in a wide range of difficulties such as problems with memory and other cognitive skills, changes in personality, emotional and behavioural difficulties, epilepsy, fatigue and other physical difficulties which can make return to communities, education and occupation very challenging. To complicate matters, an injured brain is not visible, and, so, people’s difficulties are mostly hidden – they look as before the illness.
Full comprehensive assessments and plans for rehabilitation and recovery should be put in place for each individual affected. Timely and free access to neurorehabilitation (medical process for recovery from a nervous system injury) can improve outcomes. Support for the whole family is needed. Overall, appropriate rehabilitation services, multi-disciplinary approach, free and quick access to these services and tailored interventions can improve the rehabilitation/recovery experiences and give a better quality of life not only for the person affected, but the whole family.
Mental health issues, self-injurious thoughts and suicidal behaviours following encephalitis may occur for a number of reasons: the direct biological effects on the brain during the early stages; as a result of disease-related psychological or physical consequences or disability: impaired self-image, limited social life, reduced financial security, dependency on others, pain, substance use; or as an adverse effect of treatments given to help with the encephalitis itself or its consequences.
Psychiatric symptoms and syndromes have been less investigated than neurological deficits and symptoms in auto-immune encephalitis patients which means that these symptoms may likely be underdiagnosed in this patient group. Thus, there is a need for more research addressing the breadth, nature, causes and impacts of psychiatric symptoms in patients who have had encephalitis.