May is National Guillain Barre Month! Hooray? Not only is it National GBS month, this May will mark 30 years ago that I had GBS. 30 years people....that's a LONG time ago!
Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.
It’s also called:
- Acute Inflammatory Demyelinating Polyneuropathy
- Landry’s Ascending Paralysis
The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning. Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.
I had the flu a week before I was diagnosed with GBS. It happens fast. One day I was a normal two-year-old, a few days later I was paralyzed in ICU.
How is GBS diagnosed?
To confirm a diagnosis, two tests may be performed:
- A lumbar puncture looking for elevated fluid protein
- Electrical test of nerve and muscle function
I am incredibly grateful that my pediatrician had seen a case of GBS in his residency. He had my mom put me on the floor to walk and I collapsed. He didn't even wait for an ambulance, he grabbed an oxygen tank, told my mom to get my car seat (even though it was 1982) and we drove to the hospital in his personal car.
How is GBS treated?
GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks. Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.
Unfortunately none of these treatments were readily available when I had GBS and even they had been, I didn't have enough blood to sustain them. So, GBS ran its course. I was paralyzed in ICU and on a ventilator for a month and then stayed in the hospital for three months after that. I was released even though I still couldn't walk. I wore AFOs until I was 24 (don't ask, still not my favorite subject) when both of my ankles were fused. I don't remember much and most of what I know comes from my parents.