Sudbury: Mother with ‘suicide disease’ is backing international Trigeminal Neuralgia Awareness Day
PUBLISHED: 08:01 24 September 2013 | UPDATED: 08:01 24 September 2013
West Suffolk mother Kirsti Leeder knows only too well why trigeminal neuralgia (TN) is often referred to as the “suicide disease”’.
For the past 17 years, the 44-year-old from Sudbury has suffered from the cripplingly painful condition, a neuropathic disorder that causes bouts of intense pain in the face.
It has been described as “the most excruciating condition known to medical practice”, and an estimated one in 15,000 people worldwide suffer from the disorder.
But despite its existence, due to the lack of medical education on facial pain disorders, most people are not aware of TG and many sufferers go without the proper treatment due to frequent misdiagnosis.
Ms Leeder, who has two teenage daughters, has had brain surgery twice and has taken dozens of different medicines for the condition, which is believed to be caused by the trigeminal nerve fusing to an artery.
On October 7 she will take part in the first International Trigeminal Neuralgia Awareness Day, to raise the profile of the condition.
She told the EADT: “When I first had TN, I initially thought it was a persistent toothache that nothing seemed to help. I was put on medication including epilepsy drugs, antidepressants, Paracetamol and morphine, which doctors just kept increasing.
“It took years before I was referred to a neurosurgeon to get a diagnosis and I was frequently told I had migraine. It is not a headache – it’s a severe, intense shooting pain that affects your eyes, ears, teeth and whole face.”
Ms Leeder, who works at Wells Hall Primary School, Great Cornard, was eventually offered brain surgery known as microvascular decompression, where a piece of Teflon is inserted between the trigeminal nerve and the artery to relieve the pressure.
This has eased the condition to a great extent. But she added: “No-one seems to fund research into why this happens to people. It’s known as the suicide disease because sufferers get to the point where they cannot put up with the pain any longer.
“It has impacted on my family life and has impaired my ability to work. Not enough is known about it and that is what we are aiming to change with the awareness day.”
On October 7, landmark monuments and bridges including Canada’s Niagara Falls are lighting up in the colour teal, and coloured ribbons will be handed out.