Trigeminal neuralgia petition to the world health organization
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Please sign our TN Petition to (WHO) asking to add Trigeminal Neuralgia to their "Health Topic List"
This petition is asking the World Health Organization to add Trigeminal Neuralgia on their "Health Topic List" No $$ is needed, just your name, email address then hit "Sign Now" and close out the donation window.
UPDATE 25 May 2019
WHO Recognizes Chronic Pain as Disease With New Coding System
The World Health Organization has adopted a new classification system for chronic pain, assigning it the code ICD-11 in a revision of the International Classification of Diseases (ICD).
It’s the first time the ICD will include a specific diagnostic code for chronic pain.
For example, neuropathic pain can be a symptom of cancer or chemotherapy, while trigeminal neuralgia could fall under neuropathic or orofacial pain. he new coding system will make it easier for physicians to diagnose, classify and get treatment for chronic pain patients.
Insurers will use the new codes to authorize payments and researchers can use them to more easily track and measure the effectiveness of therapies. That’s the good news.
The bad news is that the ICD changes won’t formally take effect until Jan. 1, 2022. Source: Pain News
Director-General
World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland
RE: Trigeminal Neuralgia
Dear World Health Organization and Member States
We are requesting that you please add Trigeminal Neuralgia to your “Health Topics” list.
We've sent over 20,000 signatures of sufferers and supporters of Trigeminal Neuralgia that are asking for your help in bringing awareness and research to Trigeminal Neuralgia and other Facial Pain Disorders. Trigeminal Neuralgia (TN) has been universally described by medical professionals and sufferers alike as the most painful condition known to mankind.
For years we have been active as thousands of unified voices utilizing social media and traditional media outlets to bring this invisible illness out into the light. People simply must pay attention to the suffering and life-disabling plight of people who suffer from Trigeminal Neuralgia, also known as Tic Douloureux.
” Lack of funding and awareness means there is little accurate data on exactly how many global citizens are currently facing the destructive plight of this illness. Information from the Facial Pain Research Foundation suggests it is approximately 4 to 8 million sufferers worldwide (1 in every 20 thousand individuals).
While the last epidemiological study on the prevalence of this disease is more than 25 years old, leading medical experts believe that it currently afflicts .01% of the world’s population. Misdiagnosis and failed medical and surgical treatments are prevalent. Given the severity of this pain and the estimated number of patients worldwide, it seems to defy belief that, so little is being done to help the afflicted.
What is needed:
- We need you to add Trigeminal Neuralgia to the "Health Topics" list.
- We need access to treatment and resources for everyone, no matter where they live.
- We need new medications and procedures to therapeutically target the Trigeminal Nerve.
- We need awareness among doctors for proper diagnosis.
- We need more Neurologists, Neurosurgeons, and Dentists specializing in the treatment of Facial Pain Disorders.
- We need an understanding of TN at governmental agencies to help obtain benefits for disability.
- We need WHO’s assistance in funding research for a cure for Trigeminal Neuralgia.
Updated: (October 7th of every year will be the International Trigeminal Neuralgia Awareness Day)
Adding Trigeminal Neuralgia to your list of illnesses will expand awareness, grant access to further resources, and create opportunities for funding and research.
We have produced ribbons and online documents, and made donations to The Facial Pain Association and The Facial Pain Research Foundation.
We have had numerous international press releases this year, have broken down obstacles in countries every day, met with political leaders and heads of embassies, spoken to regional health organizations, and given interviews to various media outlets.
We have created the first Trigeminal Neuralgia awareness ribbon in 2012.
Additionally, we have published the first Trigeminal Neuralgia Tri-fold brochure and have distributed it in numerous doctors, hospitals, and urgent care facilities worldwide. That stated we cannot do all of this on our own. We are individuals casting a light on this dark, unrelenting, and painful disease.
We will continue to push this petition until WHO adds Trigeminal Neuralgia to the “Health Topics” list.
We need your help to bring relief to millions worldwide and stop the inhumanity of ignoring such a tragic and life-disrupting illness.
Sincerely,
Toni Saunders, The International Trigeminal Neuralgia Awareness Fighters, TN Sufferers and Supporters Worldwide
Founder: TNnME
TS/Dana Fryar-Homier
You can make a tax Deductible Donation right now.
CLICK THE DONATE BUTTON...or
Send Check To:
The Facial Pain Research Foundation
2653 SW 87th Drive, Suite A
Gainesville FL 32608-9313
CLICK THE DONATE BUTTON...or
Send Check To:
The Facial Pain Research Foundation
2653 SW 87th Drive, Suite A
Gainesville FL 32608-9313
New! Facial Pain Awareness Month presented by The Facial Pain Advocacy Alliance
International Trigeminal Neuralgia Awareness Day October 7th!
Much like the insulation around an electrical wire, the myelin sheath around the trigeminal nerve enables electrical impulses to be conducted along the nerve fiber accurately. When the myelin sheath is damaged it's like live wires touching each other and the correct information to the brain is not being sent.
A simple breeze, shaving, brushing your teeth and many other sensations can be received by the brain as excruciating pain in the form of shocks and stabbing pain in one or more areas of the face.
If you've ever had a severe toothache, been punched in the nose, poked in the eye, had a migraine or a sinus infection, then you have experienced a small portion of the pain that the trigeminal nerve is capable of sending to the brain.
Just imagine all that at the same time -- to the extreme -- and add in your face being hooked up to a car battery at the same time. Yes, there is a reason why Trigeminal Neuralgia is often called the world's worst pain. It hurts like nothing you've ever felt in your life.
If you're lucky the mixed-up signals are brief. But some can last for hours, days, weeks. Some people have it constantly and some people have it for brief moments hundreds of times a day.
Each case is different, as is what medication, treatment or surgery you might best respond to. It really is different in every case, which is why we so desperately need research into Trigeminal Neuralgia.
Research is getting close to explaining some things about Trigeminal Neuralgia. But because it's so rare -- only 4 to 8 million sufferers worldwide -- research funding is hard to get.
Year after year we are turned down by the World Health Organization despite the severity of the pain, and the more than 20,000 signatures on a petition to them. The WHO is a specialized part of the United Nations, concerned with international public health. Being listed by the organization would mean money for research and maybe even someday a cure.
For now, we with TN are doing it on our own. Each organization, association, committee, page and group about Trigeminal Neuralgia exists because someone with the disease created it. We have asked, we have cried, we have begged, we have gotten angry, depressed, lost homes, jobs, family, friends, even our lives, waiting for help to come from someone, anyone other than us ...
We are tired, we are weary, and we are in pain. But we are fierce, we are strong and are united across the world to bring awareness to Trigeminal Neuralgia. Our pain needs to be seen and heard by those who are able to provide the help we so desperately need.
For more information on how you can help Trigeminal Neuralgia awareness visit
www.TNnME.com
For more information on Trigeminal Neuralgia research and to see how you can help find a cure visit www.facingfacialpain.org
If you have Trigeminal Neuralgia and need help finding support contact
www.fpa-support.org
A simple breeze, shaving, brushing your teeth and many other sensations can be received by the brain as excruciating pain in the form of shocks and stabbing pain in one or more areas of the face.
If you've ever had a severe toothache, been punched in the nose, poked in the eye, had a migraine or a sinus infection, then you have experienced a small portion of the pain that the trigeminal nerve is capable of sending to the brain.
Just imagine all that at the same time -- to the extreme -- and add in your face being hooked up to a car battery at the same time. Yes, there is a reason why Trigeminal Neuralgia is often called the world's worst pain. It hurts like nothing you've ever felt in your life.
If you're lucky the mixed-up signals are brief. But some can last for hours, days, weeks. Some people have it constantly and some people have it for brief moments hundreds of times a day.
Each case is different, as is what medication, treatment or surgery you might best respond to. It really is different in every case, which is why we so desperately need research into Trigeminal Neuralgia.
Research is getting close to explaining some things about Trigeminal Neuralgia. But because it's so rare -- only 4 to 8 million sufferers worldwide -- research funding is hard to get.
Year after year we are turned down by the World Health Organization despite the severity of the pain, and the more than 20,000 signatures on a petition to them. The WHO is a specialized part of the United Nations, concerned with international public health. Being listed by the organization would mean money for research and maybe even someday a cure.
For now, we with TN are doing it on our own. Each organization, association, committee, page and group about Trigeminal Neuralgia exists because someone with the disease created it. We have asked, we have cried, we have begged, we have gotten angry, depressed, lost homes, jobs, family, friends, even our lives, waiting for help to come from someone, anyone other than us ...
We are tired, we are weary, and we are in pain. But we are fierce, we are strong and are united across the world to bring awareness to Trigeminal Neuralgia. Our pain needs to be seen and heard by those who are able to provide the help we so desperately need.
For more information on how you can help Trigeminal Neuralgia awareness visit
www.TNnME.com
For more information on Trigeminal Neuralgia research and to see how you can help find a cure visit www.facingfacialpain.org
If you have Trigeminal Neuralgia and need help finding support contact
www.fpa-support.org
Below Links on how YOU can spread awareness for Trigeminal Neuralgia and Facial Pain Disorders
Intl TN Awareness Petition
TN/FP Resource
Intl TN Awareness Ribbon
TN Awareness Products
TN/FP Awareness Videos
TN Short Stories by Brian Whitaker
What is Trigeminal Neuralgia?
What is Facial Pain Disorders?
What is the Battle Scars of TN/FP?
How to Donate to the Facial Pain Research Foundation?
Why is Trigeminal Neuralgia classified at G50?
Letter to the World Health Organization
Open Letter to Dentist and Oral Surgeons
Open Letter to Doctors
Open Letter to Emergency Room Doctors
Intl TN Awareness Petition
TN/FP Resource
Intl TN Awareness Ribbon
TN Awareness Products
TN/FP Awareness Videos
TN Short Stories by Brian Whitaker
What is Trigeminal Neuralgia?
What is Facial Pain Disorders?
What is the Battle Scars of TN/FP?
How to Donate to the Facial Pain Research Foundation?
Why is Trigeminal Neuralgia classified at G50?
Letter to the World Health Organization
Open Letter to Dentist and Oral Surgeons
Open Letter to Doctors
Open Letter to Emergency Room Doctors
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