A Patient's Perspective
Confronting Guillain-Barré Syndrome
Am Fam Physician. 2013 Feb 1;87(3):166.
Related article: Guillain-Barré Syndrome
I was visiting friends in Antigua, Guatemala, when it happened. Having just recovered from a mild sore throat, I went to bed feeling healthy and hearty. I awoke the next day with wobbly legs and weak arms, barely able to make it to the bedroom door. When help came a few minutes later, I was unable to get up. Within six hours I was almost completely paralyzed below my neck and in an ambulance that was transporting me back to my adopted home in El Salvador, where I had been teaching public health at the national university. Within hours of arriving in San Salvador, I was started on high-dose immune globulin therapy.
For several days I struggled to breathe. GBS affects the peripheral nerves and spares the central nervous system, so I was entirely aware of my circumstances. I felt a plethora of emotions, each accompanied by concerns about disability and death or thoughts of acceptance, as well as hope for the future. I am better now and have regained all of my motor skills. I tire easily—my limbs feel like lead with every movement—but at least I am on the road back to normalcy. For that I am profoundly thankful.
I remember the physicians telling me early on that GBS is a benign disorder; it would run its course, and I would be better with time. Technically, they were right. However, in the face of such a devastatingly rapid paralysis, GBS is anything but benign. I will never use the word “benign” with my own patients without carefully and patiently explaining what it means in the context of their illnesses.—WILLIAM VENTRES, MD, MA
A phone call alerted family and friends that Bill had contracted GBS and was hospitalized. He was paralyzed from the neck down. His gasping voice confirmed he was barely able to breathe or speak. Immediately, questions arose: Did he have adequate health care? Should he be flown back to the United States? Would he recover? What could family and friends do to help from a distance?
E-mails confirmed that he was receiving excellent care from Salvadoran health professionals and support from friends. He was going to survive, but likely with a long recovery period.
When I visited three weeks after the illness began, Bill met me at the airport in his wheelchair with a beaming smile. He was recovering rapidly. Although he was weak, he could walk with assistance and was happy to be alive.
Centers for Disease Control and Prevention: http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm
National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/disorders/gbs/gbs.htm
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