“The illness took away the greatest thing I had – my memory,” says Morag Blandford (53) from Windsor (UK), who lived in Germany for twenty years. What she did yesterday or experienced a few years ago – everything is erased!
The Brit suddenly got violent convulsions in the fall of 2019. At first her doctors were convinced that Morag suffered from epilepsy. But the cause was encephalitis, which affects one person worldwide every minute. However, 77 percent of people do not know what it is.
BILD explains the disease, the dramatic consequences it has for many sufferers and how it can be treated.
What is encephalitis
Encephalitis is inflammation of the brain. “It can be caused by viruses or bacteria, but it can also be an autoimmune disease,” explains Prof. Carsten Finke, neurologist at the Berlin Charité. “Unfortunately, the disease is relatively often associated with late effects.” The decisive factor is how quickly the diagnosis is made and the therapy is started.
In Morga’s case, the immune system had attacked her own brain, thinking it was a virus. Many sufferers are often at a loss because they think they suffer from epilepsy or one mental illness.
The effects of encephalitis can be dramatic. On the one hand, there are psychiatric symptoms such as anxiety, mania, relapses similar to schizophrenia, psychoses, depressions. On the other hand, there are neurological abnormalities, epileptic seizures, increasing unconsciousness and movement disorders as well as signs of inflammation in the cerebrospinal fluid. Twitching of the face and involuntary smacking are also typical.
Many sufferers have suicidal thoughts
Nothing has been the same for Morag since her illness. “I used to work in controlling, but now I don’t know how it works anymore,” she explains sadly. Sometimes she volunteers at a soup kitchen. But that, too, is difficult for her: “I forget the work processes.” Every morning she starts to write down what she did the day before, because that’s the only way she can remember.
A condition that puts a lot of strain on Morgan: “I suffer from severe depression, have suicidal thoughts.” Because of the massive psychological symptoms, many of those affected are at risk of suicide, as studies show – for example the current preprint study by British researchers under the direction of dr. Tom Pollak from Kings College London. It shows that of 445 encephalitis patients, 37.5 percent had thought about suicide or even attempted it (4.4 percent).
“This powerful and important research raises awareness that suicidality can be a not uncommon and serious manifestation of encephalitis, in the early stages of the disease, during flare-ups, and perhaps later in people’s journey to recovery,” he said dr Ava Easton, Executive Director of the Encephalitis Society.
How is encephalitis treated?
Children and young adults are particularly at risk of developing such encephalitis. Also, people with a weakened immune system are at higher risk.
A quick diagnosis is important. Once diagnosed, the autoimmune disease is relatively easy to treat. Nerve cells are only disturbed in their communication by the immune system, but usually not destroyed. Therefore, the immune system is suppressed in therapy, for example with cortisone or other drugs. Blood washing can also be used to rid the blood of antibodies.
In order to ensure rapid treatment, those affected should take warning signs such as sudden high fever with nausea, headaches and disturbances of consciousness seriously and have them clarified immediately. The doctor can identify the corresponding pathogens from the blood or cerebrospinal fluid.
Morag’s immune system has attacked her brain so badly that despite treatment, she is still not fully healed. She wonders every day if she will ever recover. “I may look the same, but I’m not who I used to be.”
Dealing with her illness is not easy for her family either. “My husband is my memory, he has to think for me.”