May is Guillain-Barré awareness month, which before the 23rd of December 2024 I had never even heard of.

Guillain-Barré syndrome is a rare autoimmune condition affecting the peripheral nervous system, usually leading to temporary or long-term paralysis. Around 80% of those with GBS will make a good recovery, but between 5-10% of people will not survive and the other 10-15% may be left with severe mobility or dexterity issues.

On the 23rd December 2024 I became critically unwell with GBS and was taken into hospital and then admitted to intensive care. Symptoms of GBS can vary, some people get a mild form of just tingling and weakness of the limbs. Unfortunatley for me, I had the most severe form of symptoms. I became completely paralysed, my lung collapsed and I needed to be ventilated (a machine breathing for me).

I have had to learn to do everything again. To breathe for myself, to drink, eat, move every single part of my body, walk and so much more.

I spent three months in either hospital or a neurological rehabilitation centre. I am grateful I was able to come home so quick as my family were preparing for a six month stay or more.

GBS is terrifying, I cannot explain the fear of being completely paralysed and not being able to communicate with anyone for weeks on end. My only way of communication was to blink and once a tracheostomy was fitted, attempt to mouth my words.

If you were to look at me walking (slowly) down the street you may see a slight limp, a wonky smile and a tracheostomy scar on my neck. What you don't see is how grateful I am to be alive and back cuddling my daughter everyday. I still have a long way to go in terms of recovery but I am on the right path and I couldn't be more thankful for that.

GAIN supported my family through my time in hospital and I couldn't just sit back during the month of May and not try and raise some money for them somehow, as well as trying to raise awareness. Although it might not seem like much to some people, walking the equivalent of four marathons in a month. However for someone who had to learn to walk again in the months prior, it is a huge challenge (one I feel I can achieve though!).

GAIN helps people understand and manage both acute and chronic variants of the syndrome, raises awareness, and promotes clinical and non-clinical research into these conditions. For more info visit www.gaincharity.org.uk

Thank you,

Lucy x