You probably haven’t. It is estimated that only 1 in every 100,000 people experience Guillain-Barré Syndrome (GBS). For those who do know what it is, there is probably a friend or family member who has been diagnosed with GBS.
This is a great informational source: Guillain-Barré Syndrome for Laypeople
Of those who experience Guillain Barre, only 5% have a recurring episode (excluding those diagnosed with the chronic form). My mom is truly a rare person; that makes her one of very few people to fall into this category. We always knew she was special 🙂
I first heard the term “Guillain-Barré Syndrome” when I was 8 years old. My mom, 31 or 32 years old at the time, had Guillain Barre. (That was 20 years ago and I still have trouble spelling and pronouncing the name!) I remember being called to the principal’s office in 3rd grade with my sister, worried sick that she had done something to get both of us in trouble! I remember he sat us down and told us something about our mom passing out at work and being taken to the hospital, that someone else would be picking us up from school, and that we could sit in his office until they came to pick us up. I don’t remember much of what followed, but my mom describes it as a long, difficult 6-8 months. She was eventually diagnosed with Guillain Barre, and sent home to lay in bed until her strength returned. There were no treatments for Guillain Barre in 1992; at least none that she could access.
Her strength did return, and she no longer had Guillain Barre; it is not considered a long-term or chronic disease like Parkinson’s or MS, rather an acute but short term “syndrome” usually brought on by a virus or infection (My mom had neither).
Soon subsequent “weird” (rare) health issues followed, and Guillain Barre became something rarely discussed, and if so in past tense. In the following 20 years, from my recollection, my mom had: hypoglycemia, gastroparesis (her stomach was paralyzed for 7 years, then started working again without treatment), breast cancer, an acoustic neuroma that caused deafness in one ear….and definitely some other stuff I am forgetting. The woman doesn’t get colds, or the flu, or sinus infections- just rare stuff! Each “illness” was treated separately and basically in a silo; no one has identified any correlations between any of her health issues. Of them, breast cancer is the only one to be considered “genetic,” and she had a test done a few years ago that showed she did not have the “breast cancer gene.”
Back to the present….on Mother’s Day of 2012, my mom’s legs gave out beneath her & she had to try 3 times to get herself off of the ground. This is someone who was literally hopscotching with her OT patients 2 weeks prior. She went to the doctor & was sent to the hospital where she was again diagnosed with Gillain Barre & stayed for about 2 weeks; luckily treatment is now available – she received 2 huge doses of “IVIG” – basically other (healthy) people’s immunoglobins from their plasma pumped into your system via IV.
Since it is so rare, people almost always ask me “what’s that?” when I tell them that my mom has Guillain Barre. My answer has always been very vague; I understand very little about GBS. However, I am definitely aware of its existence. I found this great “guide” online today that I feel compelled to share to hopefully help someone else better understand Guillian Barre, at least the few pieces of it that doctors and researchers understand. Click below to download the PDF.
Do you know someone who has or has had Guillain Barre? If so, I’d love to hear any suggestions or personal stories that you are willing to share….