TNNME: TRIGEMINAL NEURALGIA and ME
  • Intl TN Awareness Petition
  • Trigeminal Neuralgia Awareness
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    • Cherokee Hat Trick by Brian Whitaker
    • Intl Arts 4 a CURE
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    • Author Brian Whitaker: Going Down Short Story >
      • The Pharmacy by Brian Whitaker
      • Gabapentin
      • Shakespeare My TN Buddy
      • Having a Good Time-TN Version
      • 1126 Tomcat Way Full GM Edit
      • Author Brian Whitaker: The Rat
      • There's an elephant on my face
      • TN The Pain Awakens
  • TN Awareness Products
  • What is Trigeminal Neuralgia?
    • Facial Pains Disorders
    • Battle Scars of TN and FP
    • Research 4 our CURE
    • Stop It Coffee For A Cause
  • 2022 Light Up Teal 4TN
  • 2021 Light Up Teal 4 TN
  • Our 2021 TN Day
  • 2020 Light Up Teal Trigeminal Neuralgia
    • Lighting Request Info
    • Trigeminal Neuralgia: Why Light Up Teal?
    • Our 2019 TN Awareness Day
    • 2018 Intl Light Up Teal
    • Our 2018 TN Awareness Day >
      • 2017 Light Up Teal 4 TN & FP
      • 2016 Light Up Teal 4 TN
      • 2016 Oct 7 Intl TN Day Events
      • 2016 Intl TN Awareness Day Events
      • 2015 Light Up Teal
      • 2015 TN Day Photos
      • 2014 Light Up Teal
      • Oct 7th 2014 Intl TN Day Photo >
        • 2013 Light Up Teal
        • Betsy Alexander's TN Story
        • Artist Tara Shuey Story
        • Maureen Stone Story
        • Artist Tara: Loved one’s perspectives…………
        • Miriam Fraser's TN Journey
        • Honoring the Taken
        • Rebecca Thorpe Story
        • Nikki Samuel Story
        • Holley Pesina TN Story
        • Susan Wiffill Story
        • Daniel R. "Bob" Snodgrass
        • Frank Skoviera Story
        • Kristina Pelly-Filocamo Story
        • Lagi Leau Story
        • Karen Brigham Story
        • Jennifer Rodgers Houghton Story
        • Dawn Raye Winner
        • Ron Blair Story
      • 2016 Race to Save Face
      • Children & Teens with TN
  • TN: Media Center
    • TN Proclamations
    • Open Letter: Dentist and Oral Surgeons
    • TN & the ER ROOM
    • Open Letter: ER DRs
    • AN OPEN LETTER TO DOCTORS
  • To WHO
    • Hello WHO >
      • TNNME (Toni) Story
      • It's ME on TNnME 10/7/2017
      • 9/21/2016 TNnME Press Release
      • Living in the moment
      • My TN Symptoms
      • Hormones with Trigeminal Neuralgia
      • Trigeminal Neuralgia and Me
      • Cluster Headache Links
      • (CH) Abortive & Preventive treatments
      • Cluster Headache
      • Contact Form
  • Intl TN Awareness Petition
  • Trigeminal Neuralgia Awareness
    • TN/FP Resources >
      • TN: Working Together >
        • United States Resources
        • Ireland Resources
        • United Kingdom Resources
        • Australia & New Zealand Resources
        • Netherlands Resources
        • Finland Resources
        • Canada Resources
        • Brazil Resources
        • Why Does Pain Get Worse When a Storm Is Coming?
        • TN & Social Security Disability Help
  • International TN & FP Ribbon
    • Countdown Clock
    • Intl TN Awareness Videos
    • Intl TN Magazine
    • Poems by Intl TNers
    • Cherokee Hat Trick by Brian Whitaker
    • Intl Arts 4 a CURE
    • Photos of TN & Facial Pains
    • Author Brian Whitaker: Going Down Short Story >
      • The Pharmacy by Brian Whitaker
      • Gabapentin
      • Shakespeare My TN Buddy
      • Having a Good Time-TN Version
      • 1126 Tomcat Way Full GM Edit
      • Author Brian Whitaker: The Rat
      • There's an elephant on my face
      • TN The Pain Awakens
  • TN Awareness Products
  • What is Trigeminal Neuralgia?
    • Facial Pains Disorders
    • Battle Scars of TN and FP
    • Research 4 our CURE
    • Stop It Coffee For A Cause
  • 2022 Light Up Teal 4TN
  • 2021 Light Up Teal 4 TN
  • Our 2021 TN Day
  • 2020 Light Up Teal Trigeminal Neuralgia
    • Lighting Request Info
    • Trigeminal Neuralgia: Why Light Up Teal?
    • Our 2019 TN Awareness Day
    • 2018 Intl Light Up Teal
    • Our 2018 TN Awareness Day >
      • 2017 Light Up Teal 4 TN & FP
      • 2016 Light Up Teal 4 TN
      • 2016 Oct 7 Intl TN Day Events
      • 2016 Intl TN Awareness Day Events
      • 2015 Light Up Teal
      • 2015 TN Day Photos
      • 2014 Light Up Teal
      • Oct 7th 2014 Intl TN Day Photo >
        • 2013 Light Up Teal
        • Betsy Alexander's TN Story
        • Artist Tara Shuey Story
        • Maureen Stone Story
        • Artist Tara: Loved one’s perspectives…………
        • Miriam Fraser's TN Journey
        • Honoring the Taken
        • Rebecca Thorpe Story
        • Nikki Samuel Story
        • Holley Pesina TN Story
        • Susan Wiffill Story
        • Daniel R. "Bob" Snodgrass
        • Frank Skoviera Story
        • Kristina Pelly-Filocamo Story
        • Lagi Leau Story
        • Karen Brigham Story
        • Jennifer Rodgers Houghton Story
        • Dawn Raye Winner
        • Ron Blair Story
      • 2016 Race to Save Face
      • Children & Teens with TN
  • TN: Media Center
    • TN Proclamations
    • Open Letter: Dentist and Oral Surgeons
    • TN & the ER ROOM
    • Open Letter: ER DRs
    • AN OPEN LETTER TO DOCTORS
  • To WHO
    • Hello WHO >
      • TNNME (Toni) Story
      • It's ME on TNnME 10/7/2017
      • 9/21/2016 TNnME Press Release
      • Living in the moment
      • My TN Symptoms
      • Hormones with Trigeminal Neuralgia
      • Trigeminal Neuralgia and Me
      • Cluster Headache Links
      • (CH) Abortive & Preventive treatments
      • Cluster Headache
      • Contact Form
TNNME: TRIGEMINAL NEURALGIA and ME

Trigeminal Neuralgia awareness dedicated to kids and teens

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PictureTNnME/Children & Teens with Trigeminal Neuralgia
Girl Has 2nd Brain Surgery to Alleviate Painful Disease

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#Kidsgettntoo: Youngest of the Young Patients TN Sucks.  It’s a terrible, awful, very bad, horrendously painful condition.  There is not a way to truly express how heart wrenching it is to have your child afflicted with Trigeminal Neuralgia. 

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3/2/2015 Press Release: Our Children and Teens need your help with Trigeminal Neuralgia & Facial Pain Disorders
TNnME/Children & Teens with Trigeminal Neuralgia by TN Teen Sami Stephens

Sami Stephens
Sports Med/Health Occ.
24, February 2015

Ethics in W.H.O.

The World Health Organization (WHO), is one of the largest influences worldwide in the medical realm. As described on the WHO website; “WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends…” (About). The WHO has such a large job, it is understandable that a rare disease or two may slip away from their notice, and lose the funding they deserve. However, when petitions are sent, and attention is drawn to that ignored illness, and the WHO still chooses to disregard them, what ethical right do they have to choose one illness over another? Even if that illness is rare, it still causes pain, and it still affects people’s lives. It still matters. The ethical dilemma lies in whether or not they have the right to decide which illnesses are the most “important”, and which ones deserve their attention the most.

The rare disease in mention above is called Trigeminal Neuralgia (TN). About 1 in every 20,000 people have TN, however due to lack of education, which leads to misdiagnosis and being undiagnosed, the number is assumed to be greater (O’Connor). There are currently about 45,000 people living in the U.S. with TN, and over four million worldwide, putting TN in the National Organization for Rare Disorders (O’Connor).   The International Facebook Group Trigeminal Neuralgia and Me (TNNME) and the Trigeminal Neuralgia Awareness Fighters have asked and petitioned the WHO to add TN to their Health Topics list as well as recognize October 7th as TN Awareness Day. Both groups believe that if they get this support from the WHO, it would “provide education, further research and information, and a better understanding of the debilitating, chronic pain disorder…” (O’Connor). So far the WHO still has yet to recognize any petitions or campaigns by TNNME or the Trigeminal Neuralgia Awareness Fighters, which is leading to lack of education about TN, and an inability to treat and diagnose patients.

My opinion is personally rooted, because I myself have TN. I believe on a first-hand account that the nick- name ‘Suicide Disease”, as TN is sometimes called, is an appropriate name for people who aren’t able to manage their pain with medications or treatments due to lack of knowledge. I have personally been to three different Neurologists, and even their knowledge was sometimes lacking on the subject. Many of my Primary doctors simply refer to my TN as “migraines”, not understanding that it actually has nothing to do with migraines, but actually the nerve in my face that is deciding to misbehave. I have helped several times make awareness posters to send to the WHO, and hope they do soon recognize TN and help fund research to find a cure. I believe it is ethically wrong that they get to pick and choose which illnesses are to be considered “the most important”, and that there should be a better way of distributing their funding evenly.

  
Works Cited
"About WHO." WHO. N.p., n.d. Web. 20 Feb. 2015.
O’Connor, Michaela, and TNNME (Trigeminal Neuralgia and Me). Understanding TN:
Trigeminal Neuralgia (n.d.): n. pag. Uspainfoundation. Web. 22 Feb. 2015.


 


Bring awareness to our TNA/FPA Associations and Support Groups.
Web-sites and public support pages to educate, raise awareness and share the latest information about TN, information to help you cope with the pain, etc. This information is provided for all to share.
Here are a few links:
  • EndTN
  • ​​Facial Pain Research Foundation FB page
  • Facial Pain Association FB Page
  • LivingwithFacialPain Web-site
  • Trigeminal Neuralgia Association UK Facing Pain Together
  • Trigeminal Neuralgia Association Australia
  • ​​CaTNA Canadian Trigeminal Neuralgia Association
  • ​​Ireland Support Group
  • ​Teens with Trigeminal Neuralgia 
  • ​Facebook page Trigeminal Neuralgia- Australia/New Zealand​
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