The story of Megan
My name is Megan Benfield and I was diagnosed with Guillain-Barre syndrome in November 2017.
The symptoms began the day after I was running on a treadmill in the gym. I was laughing and joking about how unfit I was in work the next day as I had cramping pain in both of my legs. Throughout the day I started to lose my balance, my grip and I was beginning to really struggle walking, almost shuffling along. The next day I woke up and my legs couldn’t take my weight. I collapsed several times before being taken into hospital in an ambulance with what they thought was restless legs – again laughing and joking that I was like bambi on ice.
The symptoms got worse by the hour and I was completely paralysed from the waist down and could not use my hands. I spent the next 5 weeks in hospital 8 days of that I was bed bound unable to do anything for myself. I had 5 days of IVIG treatment where I had healthy antibodies pumped into me through a drip, this could last up to 5 hours.
Once I had completed my treatment it was a waiting game GBS = ‘getting better slowly’ and it is SLOW!! I had physiotherapy every day and started progressing by the third week whereby I was able to walk with a zimmer frame. When I was discharged by the hospital after 5 weeks I was able to use crutches too.
Although I am not fully better and doctors cannot tell me whether I will regain all that I’ve lost with the syndrome (It is different for every person who has it). I am improving, feeling more positive by the day and am focused on getting my walk right and living my life as normally as possible.
To end I would just like to say to everyone who is recovering and everyone who is living with rare diseases that positivity is key. Take every day as a new day and keep going no matter what. To everyone else, be supportive, kind and think before you judge people based on how they look on the outside because it’s whats inside that counts!
Please support Rare Disease Day February 29th.