Raising awareness Your stories Rafaela's story My name is Rafaela and I am 15 years old. I am an Anti NMDA Receptor Encephalitis survivor and this is my story (although I do not have any recollection of what happened). On February 2017, I started lacking sleep and appetite and would awake in the middle of the night feeling very confused. I said to my mum that something felt very wrong with me and we went to the GP but apparently I was fine and it could just be stress. On February 10, I was in school and had a tonic clonic seizure in which I was unresponsive for five minutes. I was rushed to the William Harvey Hospital and after being tested for 10 hours nothing was found. All tests were okay and I was sent home. That following weekend I was a bit disoriented and confused, my parents were taking me for a walk in the forest when I had another seizure and the paramedics were called. I checked in the hospital and this would be the beginning of a living nightmare. I was more confused and disoriented, with incoherent speech and most part of the time did not know who I was. I was getting worse and tests were not showing what was wrong. Doctors were saying it could be epilepsy, but there were also signs of some mental disorder. I had a lumbar puncture and while waiting for results they then send my case to a neurology team in London and after five days I was sent to the Evelina Children’s Hospital. There was a very strong suspicion of Anti-NMDA Receptor Encephalitis and I was already being treated with steroids. I was hallucinating all the time and trying to run away. I had a second lumbar puncture which finally confirmed Anti-NMDA Receptor Encephalitis and by this time I lost my ability to speak and walk. Steroids treatment was not working and then I started IVIG which also did not make any difference. I went through many moments of catatonia and had to be tube fed. I then started the plasma exchange, which showed slight improvements. I could smile and swing my arms. Doctors had to take me to the next level of treatment, Rituximab and that was when I started to ‘come to life’. One day I woke up talking and walking! I still did not know who I was, where I was and did not even recognise my parents. The hallucinations were very present and the memory was just not there but it was a start. And then after two months I was ready to go home!!! I will forever say THANK YOU to all doctors, consultants, nurses, everybody who saved my life! It has been quite a journey but eight months later I can say I am back full time in school, my memory is back and I am attempting year 11 and GCSE’s and also doing the half of year 10 that I missed. I was very lucky and will always be grateful.