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Encephalitis survival story: How sharing allowed one patient to help others

When Stanford Medicine and Inspire combined efforts in February 2012 to launch this blog series, I was honored to be their first contributor. Documenting my story of encephalitis (swelling of the brain) was an opportunity to raise awareness about this often misdiagnosed brain injury. This illness, with a wide variety of causes, can be attributed to viruses such as herpes or mosquito-borne illnesses, autoimmune disorders, head injuries or bacteria. The scary part is that 50 percent of causes are unknown, yet the illness is likened to stroke or traumatic brain injury.

Why is desperation so common among patients? And even physicians? Because it’s so difficult to diagnose! MRIs, due to technology limitations, often overlook damage and erroneously yield normal reports. In addition, the onset symptoms vary tremendously. An example: Patient A seizes and falls into a coma while Patient B suffers from high fever and hallucinations. And many patients with less dramatic onset are sent home with a flu or complex migraine diagnosis -- and some die when not treated promptly.

Encephalitis impacts people of all ages, all geographies and of all types of health. In the U.S., roughly 20,000 people suffer from encephalitis annually and 20 percent of those patients die.

My passion for encephalitis began nine years ago, after a 30-month chase for an accurate diagnosis. Due to lack of awareness, lack of rehabilitation guidelines and such diverse presentation at onset, many of us — like I was -- are thrown in the “crazy bucket.” As a professionally successful woman who was extremely healthy at the time of onset, I didn’t accept the theory that my symptoms were “all in my head,” so I fought for answers. And when I got the diagnosis of encephalitis more than two years after becoming ill, I felt validated… vindicated after being called crazy.

When Stanford and Inspire published my piece five years ago, they not only helped me by providing a platform to share my story, but also helped future patients connect the dots on their own illness and raised awareness in the medical community.

One recent outcome from my first blog involves a patient who was fighting for custody of her child while battling neurological phenomena. Once a vibrant, go-to-person in the community who ran her own business and volunteered at her son’s school, this young woman suddenly was plagued by extreme fatigue, personality changes, tingling sensations and neuropathy, among many other challenges.

This patient and a friend scoured the internet, desperately looking for answers – and during their search, they ran across my story on Scope. The story matched this lady’s experience so well that they tracked me down, seeking help. We spoke and traded many emails, and I helped her summarize her story to communicate with her doctors. This included gathering her medical records and specifying her needs: a clear diagnosis, a treatment plan and documentation to provide to the state to keep her son.

Within a few weeks, through some connections, we got her into Mayo Clinic, where they kept her for three weeks, validating encephalitis as the diagnosis, helping her in her path for recovery and preventing separation from her son. Again, I applaud Stanford and Inspire for helping desperate patients – like this lady -- connect to others with similar struggles and find the care they need.

As for me: Nine years after my diagnosis, I still struggle with residual symptoms such as vertigo, sleep disorder and memory loss. But I’ve recovered well enough to maintain a career – something many encephalitis survivors aren’t able to do — and I’m honored to be a trusted “go to” resource for other patients and even doctors.

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.

Becky Dennis, chief marketing officer and senior vice president of a publicly traded company, is the author of a top-rated book, Brain Wreck, and a frequent speaker at medical and patient conferences. She also maintains an encephalitis blog. As a patient advocate, she is also an active member of the International Encephalitis Consortium – a group of doctors with encephalitis expertise across the globe.

Photo by giografiche

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