International Facebook Group TNNME (Trigeminal Neuralgia and Me) & The Trigeminal Neuralgia Awareness Fighters are asking the World Health Organization (WHO) not to ignore Trigeminal Neuralgia (TN) but to add TN to their “Health Topic” List & to officially announce October 7th 2013 the 1st International Trigeminal Neuralgia Awareness Day for more information please go to www.tnnme.com
Please forward this to the appropriate person that has the ability to help us get added or that can help us raise awareness for Trigeminal Neuralgia aka The Suicide Disease
Sufferers of Trigeminal Neuralgia (TN) and Facial Pain Disorders are living with what is universally considered to be 'the most excruciatingly painful condition known to medical practice' and are in desperate need for help from the World Health Organization.
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 specialties 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 recognize 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.
What we as sufferers are saying about Trigeminal Neuralgia: Physicians need to listen to the patient’s symptoms and take their pain more seriously, Inform Physicians on Trauma induced ATN/TN (concussions), Informed ER!!!!, surgery is not a cure for everyone, most people with ATN and/or Trauma ATN the MVD is not an option, The science of understanding the brain and nerves is at a beginning/turning point and much of what doctors and others have been taught is outdated, I want my life back, my brain to work like it used to and be able to go outside in cold, wind or sunshine and not live inside like a bat!, Very important to treat in whatever way is best for the presentation of TN particular to the person as it is a progressive disease/disorder. (It does not get better by waiting and over time it does develop new manifestations.) The very worst thing about TN is that there is absolutely no warning its coming.
We are organizing the first International Trigeminal Neuralgia Awareness Day for 7th October 2013.
The 1st International TN Awareness ribbons have been manufactured and are currently for sale at http://www.tnnme.com/tn-awareness-day-ribbon.html. Profits from the ribbons are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.
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 are calling on you,
"An Organisation that pursues excellence" (WHO 2013) to help us move forward to better health.