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Loss of a Loved One
Encephalitis Society
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Compared to other infectious diseases, encephalitis has a high mortality rate.
When death occurs it is usually a result of the brain swelling (inflammation). The brain is encased in a hard shell (the skull) and when it swells, it pushes downwards onto the brainstem. This part of the brain controls the vital functioning of breathing and heart beat and when the pressure upon it becomes severe it ceases to function.
The illness can be very quickly fatal causing extreme trauma for all the family. It is difficult to understand why a virus infection in the modern world can have such devastating consequences.
Many viruses can cause encephalitis it is not the virus that is specific - rather the fact that it has managed to enter the brain. Usually a blood - brain barrier prevents viruses entering the brain, why this fails in only a very small number of people is not known. We are currently funding a research project looking at possible causes.
Normally the blood-brain barrier prevents any large molecules passing from the blood into the brain. The barrier is the result of the lining of the blood vessels in the brain. Blood vessels in the rest of the body are lined by cells which fit together very loosely allowing easy movement by quite large bodies to and from the blood. Cells lining blood vessels in the brain fit together very tightly and most substances have to be actively transported through the cells rather than passing between them. This normally keeps viruses out.
Once in the brain, the virus enters nerve cells and replicates (makes copies of itself) thus damaging the cell. The copies spill out and cause the infection.
Infection is the invasion of the body by disease-producing organisms and the reaction of the tissues to their presence and to the toxins generated by them.
There are a number of ways by which a viral infection of the brain may damage nerve cells
- viruses can enter nerve cells and utilise components of the cell to replicate (make copies of itself). This may affect glucose or oxygen metabolism and is serious enough to kill the cell.
- the characteristics of the cell membrane may be altered, disturbing the electrical properties of the nerve cell.
- byproducts of the body’s defense against the infection (white blood cells, the contents of dead nerve cells and disabled viruses) can significantly alter the fluid surrounding nerve cells and affect their functioning.
- swelling resulting from additional fluid entering the brain can interfere with blood supply and compress the brain resulting in brain dysfunction.
Jason's Story
Our son Jason died from encephalitis. Like most people we had never heard of it. Jason was just 26 years old with everything to live for. He had a job he enjoyed doing, was a keep-fit fanatic, loved boxing and weight training and was doing a diploma to enable him to open his own gym. Then suddenly he developed sarcoidosis and had to go on the sick. He was put on steroids to help reduce the inflammation.
He was under two specialists at the hospital. After a couple of days he complained of very severe headaches so I went with him to the hospital and tried to get more help for his headaches. They assured us, after some more tests, that Jason's headaches would get better as the steroids and his condition were probably causing them. The next time he saw the specialist they put the steroids up to 12 a day.
He became very ill one morning after a night out with his friends and an ambulance was called. He was rushed to the hospital where they stabilised him and arranged for him to go for a brain scan. He had the scan and we were told it was normal. He was then taken to intensive care. He was unconcious for most of the day.
The next morning he stopped breathing and was put on a life-support machine. He was then taken back for another scan. This time it was far from normal but they still said they didn't know what was wrong with him. After four days they pronounced him dead and switched off his life-support. The following day they did a post-mortem which revealed he had died from encephalitis.
We are so totally devastated and felt so helpless watching him lying there. This has broken our hearts and life will never be the same for us. I hope this letter makes some sense to you but I'm crying so much as I'm writing it. I wish with all my heart I had heard of it before. Maybe things would have turned out differently, although our consultants say that there was no cure for Jason's condition. Well, if there isn't, then why not.
Kim's Story
My father, Bill Marley had a rare blood disease called Waldenstromes Macroglobuinaemia since 1978 and had been under our local hospital since then. He used to go to hospital every three to six months to have his blood checked for velocity, and we were told the disease was incurable. About five years ago his blood got worse and he was on tablets and injecting himself about three times a week for a year. He had bone marrow tests, then started having three to four pints of blood every couple of months. He then was seen every couple of months for blood skimming.
In November 1993 he was told that his spleen was diseased and enlarged, so he went into hospital and had it removed. He was on penicillin tablets as he was told his immunity system was weak. He appeared very well for about six months but then he seemed to be catching everything going. He had pneumonia four times and grew weak. In November 1994 he contracted shingles.
In March 1995 he was feeling ill and doing strange things. He seemed disorientated, lying around the house and saying odd things. He went into hospital on
A week before he died, a neuro-surgeon said it was herpes encephalitis. My father always suffered badly from cold sores on the mouth, especially when he was in the sun. The neuro-surgeon said he could not make my father better but he could stop the disease getting any worse. By this time my father slept most of the time and could not eat or drink. I used to dab his mouth with sponges and he could not even swallow. He had not eaten for over six weeks and although the hospital tried intravenous feeds my father pulled the tubes out. He appeared to be paralysed down his right side and his left arm was blue. He could not speak, was disorientated and still had shingles. My mother, my sister and myself decided to stop treatment as my father was in a terrible state. He was then sedated.
One day I was dabbing his mouth with water and his left arm came round and gave me a cuddle. He tried speaking to me but could not. It was all so frustrating for him and for me. When I left at
I still feel very low but I realise life goes on. I looked around the shops at Christmas for some charity cards for encephalitis. Are there any that you know of or will you be organising some for next year? I would be very interested.
Kim
Nicola's Christmas Card
Nicola died of encephalitis on
With the help of Radio Cornwall, a printing firm in St Ives offered 3,000 copies as a gift. We sold them to raise money for Great Ormond Street Wishing Well Appeal. The response was so great that we had another 4,500 copies printed. The following year we sold 9,000 copies to raise money for the intensive therapy unit,
When I became a member of the Encephalitis
Lynn Griffiths
Last modified: 08/05/07
