I was 19 and had just finished my first year of college when my life changed forever.
At first, I noticed some numbness in my face. Then, my arm got weak. My dad thought it might be a stroke, and we rushed to the emergency room.
There, I was diagnosed with Guillain-Barré Syndrome, a rare neurological condition that caused my body to attack its own nervous system. My doctor told me, "There is no cure, but symptoms are treatable."
It was a sentence I couldn't digest.
I was overwhelmed at how quickly GBS took over my body. Soon, I couldn't move my arms or lift my head. My diaphragm was affected, which impacted my breathing. I spent a week in a medically induced coma because I wasn't getting enough oxygen.
That was in 2018. Seven years later, I'm still recovering.
Despite GBS's life-altering impact, treatment options today are limited, outdated, and often inadequate. Fortunately, scientists are beginning to make progress against the disease. The research community and public health officials need to support their efforts -- and make fighting GBS a bigger priority.
GBS doesn't discriminate. It can strike anyone, at any age, from any background. It's rare -- as many as 6,000 Americans and 100,000 people worldwide develop GBS each year. It typically arrives without warning and progresses at frightening speed. Some patients experience relatively mild symptoms, while others lose the ability to walk, eat, or even breathe without assistance.
Even with today's standards of care, roughly 65% of GBS patients still end up in the ICU. Around one-third require mechanical ventilation. And approximately one in 20 patients die from the disease.
Because GBS moves so quickly, early diagnosis and treatment are critical. Waiting just a few extra days -- or even hours -- to seek medical attention can mean the difference between some measure of recovery and permanent disability.
Thankfully, I was diagnosed quickly. But that's not the case for everyone. Too often, patients who show up at the emergency room with symptoms of GBS are misdiagnosed with stress, dehydration, or other conditions and sent home. When the real diagnosis finally comes, their condition may already have worsened. In countries with less advanced healthcare systems, the barriers to diagnosis and timely treatment are even greater.
My own recovery journey has been long and difficult. At first, I couldn't breathe or eat on my own, so I spent months in the hospital on a ventilator and feeding tube.
Finally, I was transferred to a rehab center, where I spent six weeks strengthening my body and re-learning how to walk.
It hasn't been easy. I still have a tracheostomy tube and still use a wheelchair. Half of my face is paralyzed. And it's been challenging -- emotionally and socially -- to undertake college and young adulthood as someone with a disability.
I'm not alone. Recovery is often a years-long or even lifelong process for GBS patients.
Today, I'm an advocate for improved accessibility at colleges, theme parks, concert venues, and other public spaces. I want to help create a world where it's easier for people with disabilities to navigate environments like these.
There needs to be better treatment options for GBS, too. For decades, families impacted by this terrifying illness have waited for treatments that do more than blunt the worst of its effects. The standard therapies, while helpful for many patients, were developed long ago, and they aren't approved by regulators in the United States for treating GBS.
The good news is that there's hope on the horizon. Scientists are working on drugs that, for the first time, target the biological mechanisms behind GBS. These therapies show promise in shortening recovery significantly and preventing the worst complications.
But these breakthroughs won't help anyone unless public health officials make them a priority for regulatory review -- and advise that patients should have access to them when they become available.
No one should have to experience what I did. If we act now, maybe they won't have to.
Charisma Mangahas is a Guillain-Barré Syndrome survivor, a disability advocate, and a public speaker.
