Thursday 29 June 2017

Addition to WHO list would help raise awareness and funding

Trigeminal Neuralgia Awareness Fighters says that a lack of funding also means there is no accurate data on the number of sufferers globally
Trigeminal Neuralgia Awareness Fighters says that a lack of funding also means there is no accurate data on the number of sufferers globally

TRIGEMINAL neuralgia is a condition which is being "overlooked and ignored" according to the International Trigeminal Neuralgia Awareness Fighters, which is currently campaigning for the World Health Organisation to include TN on its Health Topics List.

Earlier this month the group warned that failure to do so was resulting in a lack of research funding as well as funding to raise awareness of this condition – also known as tic douloureux or 'the suicide disease'.

The group says that a lack of funding also means there is no accurate data on the number of sufferers globally – it's estimated to be in the region of four to eight million.

So far, the organisation and its website www.tnnme.com has collected over 8,000 names on an online petition to be presented to WHO asking for Trigeminal Neuralgia to be added to the Health Topics List.

This, says the group, would reduce the barriers to effective healthcare, raise awareness, increase understanding and give individuals and healthcare providers access to resources and information. It would also enable researchers to conduct clinical trials to help find reliable treatments.

The last epidemiological study on the prevalence of this disease is more than 25 years old, says the group, which adds that leading medical experts believe that it currently afflicts .01pc of the world's population.

"Misdiagnoses and failed medicinal and surgical treatments are prevalent," the group claimed in a statement released earlier this month, adding that, given the severity of the pain and the estimated number of patients worldwide it defied belief that "so little" was being done to help sufferers.

Among the high-profile venues around the world which are getting involved in the Lighting Up Teal Awareness Day on October 7 are the CN tower in Canada, Gateshead Millennium Bridge in England and Niagara Falls.

International TN Awareness ribbons are for sale at www.tnnme.com/tn-awareness-day-ribbon.html. Profits from the sale are to be donated toward research and awareness efforts.

FOR MORE INFORMATION VISIT WWW.TNNME.COM.

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