Encephalitis Symptoms Are Easy To Dismiss, but Knowing What To Watch for Could Save Your Life
Her 'UTI' was actually brain inflammation, and at least 64% of us carry the hidden trigger
Key Takeaways
- Helen Edwards, 74, was misdiagnosed with a UTI 3 times before doctors found encephalitis.
- The cold sore virus is a common encephalitis trigger—even if you've never had a visible sore.
- Antiviral medication within 48 hours can reduce brain inflammation and prevent lasting damage.
You may not have heard of Helen Edwards yet, but the 74-year-old grandmother could save your life. Her story went viral after she repeatedly sought help for encephalitis symptoms three times only to be repeatedly misdiagnosed with a urinary tract infection (UTI)—a pattern that “unfortunately, is not unusual at all for older women,” says infectious diseases expert Tyler B. Evans, MD, MS, MPH, former chief medical officer of New York City. Keep reading to learn more about the silent risk factor she has in common with many of us—plus how to protect yourself and your loved ones.
Helen’s doctors missed encephalitis symptoms all women should watch for
By all accounts, Helen was a force of nature. The Wales native swam in the sea regularly, danced at festivals, ran her own animal feed business and took her grandson to school three days a week. She was vibrant, active, unstoppable. Then she developed a fever, aches, fatigue, nausea—and her nightmare began.
She went to the doctor’s office twice and the hospital once. Each time she was sent home. Each time she got worse. Finally, Helen’s daughter Jane Richards noticed her mom go into the bathroom thinking it was her office, and “using a notepad and pressing it as if it was a phone,” Jane told The Independent. Back at the hospital a second time, a CT scan revealed the truth: Helen’s brain was inflamed. And a full week after she first sought help, she was diagnosed with viral encephalitis.
Woman's World Answers
What is encephalitis, and who’s at risk?
“Encephalitis is inflammation of the brain, usually caused by an infection,” explains Dr. Evans. “The brain is the organ under attack, so the symptoms affect thinking, behavior, personality, and orientation.” Three people develop the disease every minute, which can be triggered by a number of viruses, including the ones that cause chickenpox and shingles, (varicella-zoster virus), measles and more. The most common, says Dr. Evans, is herpes simplex virus (HSV-1), the cold sore virus. That was found to be the trigger for Helen’s case. Did she have a cold sore? No.
“This is actually one of the most important and least-understood facts about herpes encephalitis,” says Dr. Evans, co-founder of Wellness Equity Alliance, an organization committed to improving health care access in vulnerable communities. “Most people who develop it have never had a visible cold sore. HSV-1 is a latent virus, meaning once you are infected, it takes up residence in your nerve cells for life and lies dormant.”
The World Health Organization says 64 percent of younger adults harbor dormant HSV-1 and a majority of older adults carry it. “In most people, it stays quiet forever or occasionally produces a cold sore,” Dr. Evans adds. “In a very small number of people, for reasons we still do not fully understand, it reactivates and travels up the nerve into the brain.”
Encephalitis is a rare but serious complication
Many healthcare providers seldom or never see a case like Helen’s. “Because it’s a rare outcome, encephalitis isn’t going to be the first thing for a doctor to suspect,” says Brian Labus, PhD, MPH, a professor in UNLV’s School of Public Health. “There are much more common infections that can explain how the patient feels. If you have a rare disease, it is going to be more difficult to diagnose, as you rule out the common things first.”
But women have great instincts, and if you sense someone serious is wrong, trust yourself. This is the part Helen’s daughter Jane most wants people to hear. “Time is of the essence,” she has said publicly. “Knowing the symptoms is really important.”
Encephalitis symptoms you should never ignore
If your gut tells you something serious is wrong and you have any of the following encephalitis symptoms, asking about them and advocating for yourself can prevent a tragic outcome. Here’s what experts say to look for.
Early encephalitis symptoms can look deceptively like the flu:
- Fever
- Fatigue and body aches
- Headache
- Nausea and vomiting
- Increasing drowsiness
Red-flag encephalitis symptoms mean it’s time to seek immediate care:
- Sudden confusion or disorientation
- Seizures
- Loss of coordination
- Personality or behavior changes
- Difficulty speaking
The shift from flu-like symptoms to neurological symptoms is the critical signal. “Most people aren’t going to notice the personality or behavior changes in themselves, so family members might recognize the problem first,” notes Labus. Don’t wait it out. Go to the emergency room immediately. Encephalitis moves fast, and antiviral medication started within 48 hours can significantly reduce the risk of severe outcomes, especially for those with underlying medical conditions or weakened immune systems.
How to advocate for yourself if doctors dismiss your symptoms
Because all older women are more prone to UTIs, we are disproportionately more likely to have symptoms dismissed or minimized. But this can also happen to men and women of any age. If you feel your concerns about yourself or a loved one aren’t being taken seriously, keep pushing, urges Dr. Evans. Trust your instincts.
- Be direct with the doctor or provider. Say: “I’m concerned this could be something more serious and I’d like further testing.”
- Ask for a second opinion. You are always entitled to one.
- Go back or go elsewhere. If you’re sent home and symptoms worsen, return immediately—or go to a different facility.
- Bring someone with you. A second set of eyes and a second voice can make all the difference.
- Document everything while it’s fresh. Write down symptoms, when they started and how they’re changing. Neurological symptoms that worsen rapidly are a red flag no doctor should ignore.
Helen’s recovery and how she’s helping millions recognize encephalitis symptoms
Helen is currently receiving care after developing something called autoimmune encephalitis, a complication that can follow the viral form of the disease. “We don’t know what the long-term impact is going to be,” Jane has said.
Helen’s story has put a little-known condition on the radar for millions of people, helping both health-providers and ordinary folks alike be alert for signs. So many of us across the globe stand to benefit. And we hope Helen will benefit too. Because millions of us are praying for her and her family.
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