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Guillain-Barré Syndrome Awareness Can Save Lives

May is GBS Awareness Month. If you have never heard of this disease (and even if you have), please take this opportunity to learn more about it, and share what you’ve learned with others. It could change someone’s life.

Guillain-Barré syndrome (GBS), discovered in 1916, is a rare (approx. 1 in 100,000 per year) neurological disease in which the body’s immune system attacks the nervous system by destroying the myelin sheath surrounding the nerves. This impairs the ability of signals to travel to and from the brain, resulting in multiple symptoms throughout the body, such as vision issues, difficulty swallowing, lack of coordination, and prickling/burning sensations, etc. The primary symptom is weakness, which varies in severity from mild to complete paralysis, where the individual is unable to breathe independently. It can affect anyone of any age, and it usually develops after a viral or bacterial infection. In some very rare cases, it can develop within a few weeks after immunization. Symptoms begin to appear in the lower part of the body, and work their way up to the head. Recovery may take six months to a year, and sometimes longer. Most people fully recover, but some individuals may experience permanent residual weakness or neuropathy.

There are three main variants of GBS. They are all autoimmune disorders, and present with similar but slightly different symptoms:

Miller Fisher syndrome (MFS): Discovered in 1956, this rare (1-5% of GBS cases) variant is milder than GBS, and symptoms begin in the head and work their way down the body. Recovery begins 2-4 weeks after onset, and most people fully recover, but may have residual weakness.

-Bickerstaff brainstem encephalitis (BBE): Discovered in 1951, this variant is extremely rare (less than 0.01 per 100,000 per year), and more severe than GBS. Symptoms usually begin in the head and work their way down the body. It is difficult to diagnose because standard tests and scans often show no abnormalities. BBE often results in an acquired brain injury, long-term impairments, and recovery may take years.

Chronic inflammatory demyelinating polyneuropathy (CIDP): Classified as a disease in 1971, it is considered the chronic counterpoint of GBS, with patients sometimes spontaneously recovering, and sometimes relapsing throughout their lifetime. There is no known cause for CIDP, but it sometimes develops in conjunction with other polyneuropathies. It is the most common treatable chronic neuropathy, but it is as rare as GBS (0.6-1.7 per 100,000 per year). It is extremely difficult to diagnose because there are no tests to definitively identify it, and the symptoms are similar to the symptoms of many other conditions.

In December of 2009, after receiving a series of vaccines, I developed BBE, and was placed in a medically induced coma for six weeks. I spent 18 months in the hospital and two years in rehab, relearning everything from eating to toileting to walking. The long and difficult journey was made all the more terrifying by the lack of awareness and information about the disease. That is why I write this story now. Not to share my experience in all its horrifying detail. Not to inspire or commiserate or garner sympathy. But to help spread information and awareness so that hopefully, in the future, people who develop these diseases won’t experience what I did.

When the first symptoms (blurred vision, weakness) began to appear, I visited the ER at my local hospital. The tests and scans showed no abnormalities, so I was sent home after being told to stop spending so much time on the computer. I returned half a dozen more times with new and worsening symptoms (double vision, dizziness, poor balance and coordination, difficulty swallowing). Each time, further investigation turned up nothing, and I was sent home with a new diagnosis that was, at best, an educational guess (atypical migraine) and at worst, nothing more than a blow-off (psychosomatic response because of my mental illness). The doctors doubted me, my husband began to doubt me, and I even began to doubt myself. But I intuitively knew something was wrong, I could just “feel” it, and I was becoming very worried.

It wasn’t until I attended an appointment with my GP (the same one who administered the vaccinations) that the situation was taken more seriously. She sent me to a neurologist that day, who sent me to a neuro-ophthalmologist. I returned to the neurologist a couple of days later (now with one eye paralyzed and unable to swallow my own saliva), and was immediately admitted to the hospital. Over the next week, I was examined by several doctors from various disciplines, went for dozens of scans, tests, and X-rays, had countless vials of blood taken, endured two lumbar punctures and an NG tube insertion. As the results kept returning “inconclusive” or with no abnormalities, and my health continued to deteriorate, the doctors scrambled to research my symptoms and potential links. My family and I felt helpless and frightened. Nobody had ever seen this before. The neurologist suspected it was an autoimmune disorder, but with no answers from the tests or scans, and very little medical information about my specific combination of symptoms, the diagnosis was a mystery.

My neurologist finally made a tentative diagnosis, an “educated guess” if you will, based on my symptoms, their progression, and the research he had done. I was given intravenous immunoglobulin (IVIg) in the hopes of slowing and reversing the disease. It was too late, however, and a few days after Christmas, I went into respiratory arrest. I was intubated, placed on a ventilator, and put in a medically induced coma. During the next six weeks, the battle was all about keeping my body alive as it struggled through multiple crises.

My family waited anxiously, and rushed to the hospital each time the doctors thought I might be losing the battle. Each time they asked questions, the answers they received were vague and uncertain, inevitably followed by “we just don’t know that much about this disease.” When they were asked to sign a DNR, the doctors were unable to tell them what the “odds” were of whether I might recover and what condition I would be in if I did. It was a terrifying, heartbreaking, confusing time for my loved ones, made so much worse by the lack of information, expertise, and prognosis. When I emerged from the coma, cognitively sound but physically damaged, there were still more questions than answers. I spent the next several years puzzling and surprising doctors as I recovered in ways no one thought possible, yet not fully recovering in other areas.

Today, I am disabled, I use a power wheelchair, and I live a fairly independent life in a Family Care Home (my own suite inside my caregiver’s home, where she lives with her husband and two sons). I have learned that if my symptoms were taken seriously earlier, the IVIg might have been effective in reversing the course of the disease. If I hadn’t needed to be ventilated and put in a coma, I wouldn’t have suffered so many life-threatening complications. If there was more information and awareness about GBS and its variants, the doctors may have been able to treat me sooner and more effectively. If there had been more research and case studies to reference, we may have had clearer answers and possible prognoses. If…if…if…

This is why GBS awareness is so important. Awareness = Interest = Funding = Research. We cannot control whether we develop a rare disease like GBS, but with early intervention and proven treatments, we may be able to slow or reverse its course and lessen the severity. With research, we may discover new ways to detect the disease, rather than making a diagnosis (an educated guess) based on symptoms alone. With trials and case studies, we may be able to predict the short and long-term effects of the disease, and doctors may be able to give clearer answers. And all of this would mean the patient may be diagnosed and treated sooner, lessening the severity of the disease, shortening the recovery time, improving the prognosis, and easing the fear and anxiety of everyone involved.

Learn more:

Guillain-Barré syndrome:

Miller Fisher syndrome

Bickerstaff brainstem encephalitis

Chronic inflammatory demyelinating polyneuropathy

Getty image by Halfpoint.

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