Hannah Joels was on vacation with her husband, Paul, and their young daughter in 2015 when she fell sick.
She went to the doctor, where they told her she most likely had the flu. The diagnosis was confirmed by her home doctor the following day, who attributed the illness to the time of year.
But the day after that, things took a drastic downturn. Hannah felt disoriented and confused, only responding to questions from her husband with mumbled answers.
Paul rushed his wife to the emergency room, only to wait 12 more hours to be admitted. Doctors couldn’t figure out what was wrong with Hannah.
For the next three weeks, she remained at the hospital. Her memory began to fade and she started sleeping for over 22 hours a day.
The illness quickly became so severe that she even failed to recognize her 2-year-old daughter, India.
Eventually, a brain scan and lumbar puncture revealed an extreme infection. She was ultimately diagnosed with a rare brain condition called encephalitis.
The cause of the condition is most often a viral infection and the symptoms can range from those of the flu to none whatsoever.
An early diagnosis of the condition is necessary, something Hannah did not have. Thankfully, doctors were able to catch it in time to begin treatment, but the time she waited for a diagnosis was costly.
After three weeks in the hospital, Hannah was able to go home. But she continues to have huge gaps in her memory of the last two years.
“I have told my husband on several occasions that it would be my dream to go on holiday to Thailand,” Hannah said. “He has to keep pulling out the photos of our trip to show me that we did it. It’s heartbreaking not remembering.”
Further, the condition has left the Cambridge graduate with difficulty speaking and remembering words. But doctors have told her and Paul that it is a miracle she is alive today.
“That’s only just sinking in. As frustrating as the slow recovery can be, at least I am here for my daughter,” Hannah said. “It’s horrible to think that I might not have been after I thought I had the flu.”
Scans still show dark spots on her brain, parts that have yet to recover. But those parts of her brain may be permanently damaged.
Doctors have suggested she begin to find ways to cope with her short term memory loss, but the road has been anything but easy.
As a primary school teacher, Hannah was devastated when she could not remember many of her 4th grader’s names.
“Even now so many memories won’t come back,” she said. “I don’t have a coping strategy yet, but I’m trying to make as many notes as possible on post-its and my phone so I can remember simple daily tasks.”
Paul is now working to raise $1,000 for The Encephalitis Society to help raise awareness about the potentially fatal condition. According to Dr. Ava Easton, Chief Executive of the Encephalitis Society, while eight in 10 people do not know what encephalitis is, “one person every minute will be struck down by encephalitis in 2018, irrespective of their age, gender or the country in which they live.”
World Encephalitis Day is Feb. 22. “Our hope is to bring people together whose lives have been affected by encephalitis and walk around the world to raise awareness of this devastating condition,” Dr. Easton continued.
“We estimate that it takes 52 million steps to walk around the globe. In isolation that seems like an impossible figure to reach by World Encephalitis Day, but we believe we can achieve anything by working towards a common goal.”
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