October 2014 TNnME Press Release
“FOR IMMEDIATE RELEASE”
Contact: Toni Saunders: TNnME Founder
Global Community Supporting Awareness for Trigeminal Neuralgia
International Facebook Group known as TNnME (Trigeminal Neuralgia and Me), along with the 4 to 8 million sufferers worldwide are asking for your assistance in raising awareness for Trigeminal Neuralgia and Facial Pain Disorders.
Other than the Facial Pain Association and Private groups we have no central Organization collecting internationally data from the millions that suffer with Trigeminal Neuralgia or other Facial Pain Disorders. The past year we’ve collected over 14,000 signatures asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their “Health Topic List”. By adding Trigeminal Neuralgia it will expand awareness, grant access to further resources, and create opportunities for funding and research.
You can help by signing our Trigeminal Neuralgia online petition with this year goal of 20,000 by clicking on. SIGN NOW
“Trigeminal Neuralgia (TN), often described as one of the most painful conditions to live with is primarily caused by the compression of the fifth cranial nerve (trigeminal nerve), which results in exacerbation and remission of severe facial pain. The issues specific to trigeminal pain include the problematic impact on daily function. By nature of the geography of the pain (affecting the face, eyes, scalp, nose, mouth) interference with just about every social function we take for granted is significant. The trigeminal nerve is the largest sensory nerve in the body representing over 50% of the sensory cortex. It is no wonder that pain within the trigeminal system in the face is often inescapable.” Source: UK TN Consultant
This October 7th 2014 we give thanks and gratitude to the Cities and Countries that are supporting the 2nd Annual International Awareness Day for Trigeminal Neuralgia by lighting up the color “TEAL” in support to raise awareness globally and to change the future of those who struggle with Trigeminal Neuralgia (TN) and Facial Pain Disorders.
Please see full list below and to view pictures please see: Light Up Teal Campaign for Trigeminal Neuralgia Awareness
We’re honored by the approvals for the “Light up Teal” participate on October 7th 2014 2nd Intl TN Awareness Day!
- CN Tower Canada
- Gateshead Millenium Bridge England
- Mid Hudson Bridge USA
- BC Place Stadium Canada
- Niagara Falls Canada/USA
- The Luminarie De Cagna Belgium
- Minneapolis I-35 Bridge USA
- Suntrust Building FL USA
- The Boston Zakim Bunker Hill Bridge USA
- The Torch Doha Hotel Qatar
- The Norbert Beckey Bridge IL USA
- The Science World British Columbia
- The National Library of Belarus
- Trafalgar Square UK
- The Terminal Tower USA
- Elk River Bridge WV USA
- The Anaheim Convention Center Grand Plaza
- Canton Tower New Guangzhou China
- Wells Fargo’s Duke Energy Center NC USA
- Indianapolis Power & Light Building IN USA
- Colpatria Tower in Bogota Colombia
- Taipei 101 Tower Taipei Taiwan
- Falkirk Wheel Scotland
- One Liberty Place Philadelphia PA USA
- Canada Peace Bridge
- The Helix Bridge Singapore
- Miami Tower FL USA
- The Bell Tower Perth Australia
- The TD Garden Boston Ma USA
- The Spinnaker Tower UK
- The O2 Arena Ireland
- The Mansion House Ireland
- The Cira Center Radnor PA USA
- The Kurilpa Bridge Brisbane Australia
- Bank of West Tower Sacramento CA USA
- The Milwaukee Domes Milwaukee WI
- The Peco Building Philadelphia PA USA
- Davenport Skybridge IA USA
- Glastonbury Tor UK
- The Great Lake Centre NZ
- The Skylon Tower Canada
- The Oamaru Opera House
- The Blackpool Tower UK
- City Hall in Houston TX USA
- The Radisson Hotel Covington KY USA
- Norwich City Hall in Norfolk, UK
- Liverpool Mayors Office in UK
- Liverpool University in UK
- Edmonton High Level Bridge Canada
- The Celtic Gateway Bridge North Wales UK
- The Causeway Bridge North Wales UK
- The Clock Tower Leicester UK
- Gallowtree Gate Leicester UK
- Crystal Bridge OK USA
- The Cloud Auckland NZ
- The Convention Centre Dublin Ireland
- Bishops Palace Waterford City Ireland
- St. Coleman’s Cathedral Cork Ireland
- Skydance Bridge Oklahoma City OK USA
- Cenotaph Area in Amherst, Nova Scotia, Canada
The need is great and the costs are considerable. The best way that most can help is through generous donations and ongoing, sustained, support for efforts such as those fostered by The Facial Pain Research Foundation http://www.facingfacialpain.org/ . We need everyone’s help and support to drive this mission forward and ultimately succeed. We give thanks to William H. and Leila Cilker $500,000 for their Matching Gift to The Facial Pain Research Foundation, so the time is now for donations and fundraising, please DONATE NOW
Where you can buy the Official Trigeminal Neuralgia Awareness Ribbon
Notes to editor:
About Trigeminal Neuralgia
Sufferers of Trigeminal Neuralgia (TN) and other 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 of help from the World Health Organization (WHO).
Due to the worldwide lack of education on many facial pain disorders amongst the medical profession, TN often goes undiagnosed or misdiagnosed for years. Many people have extensive dental work and visit several doctors from different specialties before ever being referred to a neurologist.
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, TN is being overlooked and ignored. Currently, the World Health Organization does not include TN on their ‘Health Topics List’. Failure to do so means lack of research funding and funding to raise awareness regarding TN and other facial pain disorders. Lack of funding also means there is no accurate data on the number of sufferers globally, but it is believed to be 1 in 15 -20,000. Estimates available say there are four to eight million sufferers worldwide (The Facing Facial Pain Research Foundation).
Given the severity of pain this disorder causes, it defies belief that more is not being done. So far, TNnME has collected over 14,000 names on an online petition to present to WHO asking for Trigeminal Neuralgia 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.
The International TN Awareness ribbons are 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.
With education and awareness the impact of this devastating condition can be reduced.
Trigeminally yours, (RIP Bob Snodgrass)