Navy veteran looks to raise encephalitis awareness
Retiree suffered from yearlong mystery
Kat Atwood sat at her desk, reading about Port Orange City Council business in anticipation of taking office in November 2022, less than two months away.
Atwood, then a 58-year-old Navy retiree, said her mind was sharp, “a steel trap.” She was in peak athletic condition, having run half-marathons all over the United States. She was a trained pastry chef. And she had recently won her seat on the council, an extension of her public service.
Suddenly, her body shook violently enough to cause a back injury. She bit her tongue, which bled. She made enough noise to get the attention of her husband Ken, who didn’t know what was happening. He attempted to steady her while calling 911.
The grand mal seizure was the first clue in what would become a yearlong medical mystery. During that time, she suffered more seizures, memory loss, shortness of breath and physical coordination that came and went. What took so long was that encephalitis − particularly the autoimmune version contracted by Kat − can be an elusive affliction.
That’s partly why Atwood agreed to become a “poster child” for the disease, which is pronounced in the United States as en-SEFA-light-iss, although the British tend to call it en-KEFA-lightiss.
In preparation for World Encephalitis Day on Thursday, Atwood has launched an awareness campaign, reaching out to cities across Volusia County, speaking at city council meetings, getting proclamations and promises from elected officials to light symbolic buildings, such as city halls, in red, the color the campaign has adopted.
“Our mission right now is to raise awareness, because nobody knew what I had,” Atwood said.
An attack on the brain
There are two main types of encephalitis: autoimmune and viral. The viral version accounts for about 70% of cases, according to the National Institutes of Health. It is contracted through an outside source such as a virus, bacteria or fungus. Most commonly in the United States, it comes from a herpes simplex virus of the mouth or West Nile virus, but there are many other causes.
Viral encephalitis − like autoimmune encephalitis − attacks the brain, which causes swelling and triggers all sorts of problems, such as memory loss, changes in personality, neurological disorders, seizures and, in as many as 40% of cases, death, according to Encephalitis International, a United Kingdom-based nonprofit.
Autoimmune encephalitis comes from antibodies within a person’s blood. Atwood’s is LGI-1, but there are more than two dozen others that essentially erroneously identify something in the brain to attack, although science hasn’t quite caught up to why.
When they attack, they cause swelling, which can sometimes be visible on an MRI, but not always, said Dr. Sarosh Irani, a neurologist at Mayo Clinic in Jacksonville.
“And what happens, as far as we understand, is that the immune system which should normally clear bugs sees the brain as a bug almost, as foreign, and tries to attack the brain, so like an error,” he said in a phone interview Tuesday.
The story of autoimmune encephalitis often involves delayed (if not missed) diagnosis, researchers including Dr. Ava Easton, chief executive of Encephalitis International, said in a Zoom interview Tuesday.
“One of the problems with the autoimmune encephalitis is that initially (patients) can present very psychiatric in nature, and so they’re often misdiagnosed and pushed down psychiatric pathways until something more serious happens, like a seizure or something that indicates to people that there is something neurological going on,” Easton said.
Irani, who last year moved from the University of Oxford in England to establish a new lab for researching immunology of the brain, said the symptoms combined with the varied nature of those who suffer from encephalitis make it challenging to diagnose.
“It can affect 2-month-old kids. It can affect 80-year-olds. It can affect men; it can affect women,” Irani said. “It can affect all ethnicities, and because it has that variability, it also has variability in symptoms.
“You can imagine a 3-month-old presenting with behavioral problems or a 70-year-old who presents with a seizure,” he said. “And you’ve got to think of encephalitis in the same bracket, so it can be quite hard.”
Survey: Most health care professionals don’t think of encephalitis
Encephalitis isn’t among the leading causes of death and isn’t among the most common diseases. But it does strike 10 to 15 people per 100,000 every year, with more than 250,000 people diagnosed in the United States in the past decade, according to Johns Hopkins Medicine.
Easton said 8 in 10 people worldwide have never heard of encephalitis.
And Encephalitis International recently surveyed emergency doctors and nurses in six countries.
“We found that more than half of them didn’t consider infectious encephalitis when presented with a commonly accepted list of the symptoms,” Easton said.
The recognition of both types of encephalitis was even worse in the United States, where 62% of medical professionals didn’t consider viral encephalitis, and 81% didn’t think of the autoimmune variety.
Easton said a hopeful takeaway from the survey was that 85% of emergency physicians and nurses agreed there would be a benefit to additional training about the condition. So that training has become Encephalitis International’s next campaign.
“I would love for there to be a day when encephalitis ... is at the forefront of people’s minds in the same way that they’re aware of meningitis and sepsis, for example,” Easton said.