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Blog Post Everyday In April: Anti NMDA Receptor Encephalitis; My story..

One night in September, 2011, not long after arriving home from a family holiday in Cornwall, I felt so exhausted, I went up to my room and did nothing for the rest of the night. I woke up in the shower, naked, on the floor, slurring my words with my family and paramedics looking down at me! They were all talking about me, but not to me and as much as I tried to speak up, it just kept coming out as slurs. The paramedics then told my family that if I hadn’t been found for another 5 minutes, I would have died.

I couldn’t walk, so my nan ran out of the room to grab me a nightie, then the paramedics and my step dad lifted me out of the shower, onto a wheelchair and then off I went, into the ambulance and into hospital.

I still didn’t understand or know what had happened, I still was slurring my words like a drunk, had no control of my head or limb movements, was crying uncontrollably and was just so confused.

Once we got to the hospital, we waited hours to be seen and when we were, they just thought I’d had a stroke. Sometimes, I wish that was the right diagnosis.

As they had kind of diagnosed me, they sent me into a ward. Where, according to my family members, after about 10 minutes of being there, I had a seizure. Which made the staff at the hospital re-think their diagnosis and bring me into my own private room.

I had a lot of tests done that week, after many nights of no sleep for me and hallucinations, one doctor came in and told us the news, I had a rare illness called Anti NMDA Recpetor Encephalitis.

It affects the brain. It makes the brain send signals to “attack the body”. Causes seizures, tumours and many more things, in some very bad cases, like mine almost was, it can cause death and so far, there is no cure for this illness.

Since then I have had numerous treatments and medications to try and treat this illness, but right now I am off all medication and haven’t had any other treatments for a few years.

All this started in the holiday the weeks before, I had come down with a sore throat before even going on the holiday. So, I went to the doctor, only to be told it was a strep throat. Which was treated with paracetamol, but kept coming back worse to the point where I couldn’t eat, drink or even open my mouth.

I hope that there will one day be a cure for this illness, but for now, I wait and fight it.

Katie x

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