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Encephalitis—spreading the word
The Lancet Neurology ( IF 46.5 ) Pub Date : 2020-03-01 , DOI: 10.1016/s1474-4422(19)30155-3
Jules Morgan

www.thelancet.com/neurology Published online April 16, 2019 http://dx.doi.org/10.1016/S1474-4422(19)30155-3 1 A life-changing, sometimes even fatal, neurological condition that can affect anyone, regardless of health status, demographic profile, or other characteristics, needs visibility. However, according to independent polls carried out by The Encephalitis Society in 2017 and 2018, 78% of the general public worldwide do not know what encephalitis is. Education and awareness can change this statistic. This is why World Encephalitis Day exists, led by The Encephalitis Society, a charity that has been campaigning for visibility since 2014. Neuro Numbers show that encephalitis now has a higher incidence than multiple sclerosis, motor neuron disease, cerebral palsy, or bacterial meningitis in the UK. Dr Ava Easton, Chief Executive Officer of The Encephalitis Society, tells The Lancet Neurology how a lack of awareness and knowledge about the condition affects: “diagnosis, management, treatment, patient outcomes and quality of life, as well as preventive measures such as vaccination”. The primary aim of World Encephalitis Day is to raise awareness, and each year the Society drives the campaign to make this happen. This year, on Feb 22, Easton went big, and the numbers reflect just how big: she cites 112 press references, 12 700 YouTube and 84 069 web site views, 2·9 million twitter impres sions, 164 300 on facebook, 130 600 on instagram, and cover age on both radio and television. Overall, an estim ated 49·5 million people were reached in 189 countries. Easton knows, first-hand, how survivors and families have “[their] worlds...turned upside down by this devastating condition”. For her, “one of the great takeaways about this World Encephalitis Day is that there have been so many highlights”—from big gatherings (20 around the world) to smaller fundraisers, and a huge social media presence, with people wearing red and sending in selfies and vid eos with hashtags #Red4Wed and #WorldEncephalitisDay. In particular, 222 million steps were taken around the world for the global awareness event, Brainwalk, which connects people affected by the condition, visiting loca tions affiliated or allied to enceph alitis. In London, sup porters travelled together in style on an iconic red bus. Wearing red, the campaign colour, on Feb 22, was a symbol of affinity and support, and Easton was pleased that medical institutions from across the world, including China, the UK, USA, India, and Zambia, were on board, which is “vital if we are to achieve our ambitions of living in a world which is aware of encephalitis, its consequences and the support available”, she says. A systematic review published in The Lancet Psychiatry in February, 2019, addressed the psychiatric features of N-methyl-D-aspartate receptor (NMDAR)-antibody encepha litis. These features often appear before any neurological signs and symptoms but, without an early diagnosis (using lumbar puncture), patients might not receive the urgent immunotherapy they need. This study found that patients with NMDAR-antibody encephalitis presented with a complex coexisting range of symptoms, such as mood disorder, psychosis, sleep disruptions, and catatonia—a psychiatric profile that could be an important indicator to make an accurate diagnosis, reducing the probability of lasting disability as well as fatalities. The study authors con clude that, “[b]y combining the characteristic epi demiology with the core clinical skill of descriptive psycho pathology, psychiatrists can generate an appropriate index of suspicion for the likelihood of NMDAR-antibody encephalitis, without reliance on frank neurological fea tures”. As a result, this type of diagnostic intervention may encourage more timely investigations, leading towards initiating treatment in the early stages of the infection. This type of research is vital to reduce incidence rates—the Society puts education at the forefront of its drive to do this, but is also committed to the more social and supportive care of those affected by encephalitis. Easton reveals how the “icing on the cake”—a National Lottery Community Fund grant—will help to “meet the rising demand for our support services and improve the award-winning digital aspects of our work”, and to continue with events that allow people affected by the illness to share their experiences. The repercussions of sur viving such brain inflammation are unpredictable, alien ating, and highly distressing, in addition to the practi cal and physical challenges that have to be overcome. Encephal itis is lifechanging, but The Encephalitis Society is forever determined to change the lives of those living with the condition—keep your red ready for 2020.
更新日期:2020-03-01
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