The story of Sara
I’m 19 years old and have been perfectly healthy almost all my life. On August 30th 2019, my life changed forever. I woke up that day and suddenly was unable to walk. The disease started by ascending up my body, so I was then paralyzed from the neck down, and was told I would need to be intubated as my diaghpram would likely go into paralysis as well. Luckily I did not need to be intubated, likely because I received IVIG treatment the second day when I was officially diagnosed with GBS after having a spinal tap done.
GBS is an autoimmune disorder in which your immune system attacks your peripheral nervous system. It causes all of your nerves to become damaged, and paralysis is the result of this. I was in an immense amount of pain due to dymelination of my nerves. Also, the variant of GBS I have is called AMAN (acute motor axonal neuropathy) meaning not only has the myelin sheath been damaged, but the actual nerves have been damaged as well. It has been 6 months since I was diagnosed, and luckily my body has been recovering, in and ascending from, as I now have full function in my arms and some movement in my legs, but I miss still unable to walk or stand.
I have come a long way and I believe that I will fully recover like the many GBS patients who have fully recovered. I wanted to raise awareness about this rare disease that only 1 out of every 100,000 people get.
*Find others with Guillain Barré Syndrom (GBS) and the Chronic Imflammatory Demyelizing Neuropathy (CIDP) on RareConnect, the online platform for people affected by rare diseases