- Posted August 29, 2013 by
Trigeminal Neuralgia - Being Ignored by WHO
Due to the worldwide lack of education on Facial Pain Disorders among the Medical Profession, the condition goes undiagnosed or misdiagnosed for years. Most people have extensive dental work and visit several Doctors from different specialities before even being referred to a Neurologist. There are no accurate investigations so Doctors rely on the individual's description and medical history. Evidence suggests that sufferers are generally over the age of 50 years, but children and even babies have been diagnosed with TN. Many sufferers are well under the age of 50 when symptoms first present.
Treatment begins with medication, ranging from anti-convulsants to opiates. If medication is unsuccessful, surgery may be offered, aimed at giving a possible period of reduced pain. Chronic pain predisposes a person to co-morbidities -depression, isolation, insomnia, anxiety, confusion, weight gain, muscle aches and dependence on prescription medication, etc, all requiring further health care. It is unusual for sufferers to continue in steady employment due to disabling pain and side effects from medication/surgery. This damages family, social and community life. However, it is being overlooked and ignored. The lack of knowledge within Governments, who do not recognise the burden of care and the implications TN and Facial Pain have on the necessity for support and benefits.
Lack of funding means there is no accurate data on the number of sufferers globally, but it is believed to be 1 in 15 -20,000. The estimates available say there are 4 to 8 million sufferers worldwide (The Facing Facial Pain Research Foundation).
Given the severity of this pain, it defies belief that more is not being done. So far, we have collected over 4000 names on a petition to present to the WHO asking for TN and Facial Pain to be added to their 'Health Topics List'. This would reduce the barriers to effective health care and would raise awareness, increase understanding and give individuals and Health Care Providers access to resources and information. It would also enable researchers to conduct clinical trials to help find reliable treatments.
We are organising the first International Trigeminal Neuralgia Awareness Day for 7th October 2013. We have produced TN Awareness Ribbons with donations going to The Facial Pain Association and The Facial Pain Research Foundation. There was an international press release on April 1st 2013. We are breaking down barriers in many countries, every day.
We believe the information provided calls for global action. It is essential that we know the true extent of this condition and the social and economic burden. With education and awareness the impact of this devastating condition can be reduced.
We need help from the World wide media to help raise awareness of the important of this condition and other facial pain conditions. The WHO continue to ignore our requests.