Alison shares her experience of Anti-GAD encephalitis and how she went on to raise funds through her gym, Life’s Peachy’ Fitness for Encephalitis International.

I started falling sick in April 2024 after my husband came home from a work trip with stomach bug. He was better within 24-48 hours while I got progressively more unwell. I saw my GP a number of times because I was feeling unwell all the time. I had some blood tests which at the time were interpreted as normal, however looking back my sodium levels were dropping. In early to mid-May, I was diagnosed with vertigo because I was having trouble with my balance and my head felt weird.

In the lead up to the vertigo diagnosis, I was having what we now know were micro seizures, increasing in intensity until my husband woke up to me having a tonic clonic seizure. I was taken by ambulance to our closest hospital where I was initially diagnosed with hyponatremia (low blood sodium levels). I spent a number of days in the high dependency ward before being transferred to my city’s major tertiary hospital where a number of tests including a lumbar puncture and MRI were undertaken which confirmed my diagnosis of Anti-GAD autoimmune encephalitis. I spent 4-5 weeks in hospital receiving high dose of IV steroid and IV immunoglobulin treatment. A couple of months later I received Rituximab which helped with some of my symptoms.

Currently I am still being treated for my encephalitis with low dose steroid and anti-seizure medication. I am still experiencing micro seizures, fatigue and have vision issues which impact my quality of life. Hopefully the vision issues will resolve. My memory has also been affected so I am still finding out things that happened in the months before and during the worst of my illness.

My gym ‘Life’s Peachy Fitness’ held a fundraiser for World Encephalitis Day. Through the fundraiser we raised over AU$300 for Encephalitis International.

 

If you would like support for encephalitis please get in touch.

Story Published May 2025