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Last year the fourth annual World Encephalitis Day reached an estimated 40 million people through traditional and social media and saw more than 50 global landmarks and buildings go red by lighting up in the colour red to celebrate The Year of Awareness.

Sites which were illuminated included Niagara Falls, the Millennium Bridge in Gateshead, the fountains at Trafalgar Square, the Fountain of Two Rivers in Modena, Italy, the Swan Bell Tower, Perth and Blackpool Tower.

Supporters continued the #RED4WED campaign by wearing red clothing on and sharing their photos on social media as well as their stories with the media.

Will you join us this year on 22 February 2018?

12 years ago I was diagnosed with HIV-related Encephalopathy and given just two weeks to live. Encephalopathy is a rather nasty infection of the brain that in my case attacked cells at the base of my brain. Side effects include confusion, disorientation, fits, weakness, personality changes, memory loss, disruption of motor skills and difficulty speaking. I know that I am lucky to be alive and be living the life that I do, as the after effects of encephalopathy can be drastic. Nerve cells (neurons) may be damaged or destroyed and this damage is termed acquired brain injury. No two people affected have the same outcome and the effects of encephalopathy can be long-term. The difference between encephalopathy and encephalitis is that the first one is a disease of the brain whilst the second one is swelling of the brain.  As there is no World Encephalopathy day, I choose to mark World Encephalitis Day.

In my case, I developed Dyspraxia, which is a form of developmental coordination disorder, a disorder that affects motor coordination. It’s thought to be caused by a disruption in the way messages from the brain are transmitted to the body – a result of the Encephalopathy I contracted. For me, Dyspraxia affects the way I absorb, retain and reproduce information; I have coordination problems too and am known to fall off bikes!

The brain takes much longer to recover from an injury than other parts of the body such as muscles, bones and skin. Coming to terms with the problems left by Encephalopathy can be hard for everyone concerned, including friends and family. Unlike other parts of the brain, you can’t see where the brain is injured or how much is repaired. Others might assume that all is back to normal when in fact you’re still recovering. Encephalopathy and encephalitis have been described as invisible disabilities which affect not only one person, but the whole family. Emotional support for everyone involved is vital, which is why the Encephalitis Society is again doing what it can to raise awareness of this disease.

Will you join us on 22 February 2018 and wear red to help raise awareness of Encephalitis? Send me your photos and see how else you can get involved here.

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