My ADEM story

By Hannah, Acute disseminated encephalomyelitis, Australia, October 19, 2018

I became very sick early July 2016 with severe headaches, vomiting and slowly losing mobility. After a few back and forth trips to doctors & emergency rooms I was finally admitted into hospital - with my illness still unknown. I ended up being sedated for a week or so - and put on a tracheostomy as I was unable to breathe on my own - while the doctors had to figure out what was wrong with me - at first thinking it was Guillian-Barre Syndrome and then later diagnosing me with ADEM (Acute disseminated encephaloemylitis).

I woke up from my coma, completely paralysed from my waist down and very confused as to why I was in ICU. I had no memory of ever being sick, let alone the past year or so of my life. My parents had to break the news to me multiple times that my own immune system had ended up attacking itself after somehow getting viral meningitis (what the ADEM stemmed from). I had an inflammation on my brain and spinal cord - hence the reason I could no longer move my legs.

It was a long journey from there. I spent a total of 3 months in hospital, slowly gaining my feeling back in my legs and trying to get them to move. I had rehab every single day and it took a while but the results finally started to show. September 23rd 2016 I was discharged from hospital - still with a walking stick and a catheter but I made it home. 

Its been just just over 2 years now since my ADEM attack and I am still struggling however I am able to live a ‘normal’ life so to speak. I have continence issues still, with my bladder compared to that of a toddlers and my brain function is still weak. I get tired very easily and it doesn’t take much physical activity for my legs to get heavy and weak. I was only 18 when diagnosed and I am from Tasmania, Australia - where there is very limited research on ADEM which makes it even harder for recovery. 

Although I may appear fine now, I still live in constant fear of getting sick and even the smallest of colds can leave me bedridden for a week - my immune system still very poor. I am lucky enough that my Dad owns his own company which I work for, so they are very understanding when I get too tired and can’t handle the workload. When I was first diagnosed with ADEM, I was in year 12 at school, so in 2017 I decided to go back and finish what I started. It probably wasn’t the best idea as I really could not handle the stress and pressure - however I am proud to say I graduated.

I still am unsure what my plans are in the future and how much more I will be able to recover from this horrible illness but overall, it has made both me and my family so much stronger and closer than ever before. 

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