New Norfolk support group for people with Trigeminal Neuralgia
A new Norfolk support group for people with a rare and painful facial nerve condition will meet for the first time this month.
People who have Trigeminal Neuralgia (TN) experience episodes of intense pain in the face, originating from the trigeminal nerve (the fifth cranial nerve).
The pain, which can last from anywhere from a few seconds to days, is so severe that the condition has been nicknamed 'suicide disease' and it can even leave sufferers unable to speak, smell or see.
Now Alec Kravis, a 92-year-old sufferer of the condition and member of the Trigeminal Neuralgia Association charity, has organised an inaugural meeting to offer support to people in Norfolk with the condition.
Mr Kravis, from Brampton, near Aylsham, had his first attack in his 80s, and while most people with the condition are over 50, it can also affect young people.
He said: 'It's a very debilitating condition and even when you have it there's no outward sign and you still look fine.
'When I have one of the attacks there's not much I can do excpet get in to a dark room and wait until it goes.
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'You can't see, you can't speak, you can't eat and you what a pain which can't be dulled by any pain killers.
'Talking to other people with it does help. That's why this support group was formed and the intention is that we get together and we talk about our condition, because you can get ideas about what other people do to keep the pain at bay.'
The first meeting will be from 3pm to 6pm on Wednesday, May 18, at the Aylsham Lodge Hotel, in Norwich Road, Aylsham, and people wishing to attend are asked confirm by calling Mr Kravis so the correct number can be catered for.
The plan is also for the group to invite experts to speak, and for it to try to raise awareness of the condition among medical professionals, as it is still quite uncommon and it can be difficult to get a diagnosis.
This is still an area of discordance among the medical professionals as to what causes TN. Most of them believe that the deterioration of the myelin, the protective coating of the nerve, allows the transmission of abnormal messages of pain.
Unfortunately in some cases a cause may not be found. There are quite a few sufferers who never find relief, although the majority do, either through drugs or surgery.
More information about the group is available by calling Mr Kravis on 01603 279362.