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A Rare Disease Known As ‘E’, And The Invisible Injuries It Leaves Behind

Today, Feb. 29, is a rare day on the calendar, and fittingly, it is officially Rare Disease Day around the world.

There are thousands of rare diseases out there — between 5,000 and 7,000, according to the European Organisation for Rare Diseases. And though each disease is rare, put them all together and they affect 6-8% of the population, the European figures suggest. About half the diseases are inborn and half come later in life, from infections and other causes.

Surely one of the most insidious diseases to strike later in life is encephalitis, a potentially devastating brain inflammation known colloquially in its community of patients and caregivers as “E.” I’ve heard mainly about encephalitis as a doctor’s nightmare, because it can be both deadly and hard to diagnose, and as a staple of summer news: Every year brings a report or two of a Massachusetts resident stricken by the Eastern Equine Encephalitis carried by mosquitoes.

But with the release of a new survey of some 250 patients with encephalitis and their family members, I now have pictures in my mind to go with the letter E:

  • An encephalitis patient who tries to light his cigarette with this thumb, forgetting that he needs a lighter to flick.
  • high-flying, 38-year-old senior vice president of a global company who delivers a presentation in southeast Asia and just two hours later suddenly finds herself unable to walk, to speak, to do anything but lie shivering in a paralyzing fog.
  • “Invisible residuals:” You may seem fully recovered to others but still suffer from lingering problems with memory, relationships, problem-solving, multi-tasking. The report drew its title from this survivor’s quote: “I look normal and act normal but it’s a very hard thing to have, as people don’t know of it…I tell friends and family but they seem to be thinking that it’s two years now and I should be better, which is of course what I feel, so it makes it very hard, but as my family keeps telling me, I am still here, just not quite the me I remember.”

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