Trigeminal Neuralgia awareness dedicated to kids and teens
TNnME/Children & Teens with Trigeminal Neuralgia
#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.
New! TNA/Facial Pain Association Tenth National Conference will be October 10 – 11, 2015 in New York CityTNA is the world’s largest organization providing education and support to patients suffering neuropathic face pain, including trigeminal neuralgia.
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.
New! TNA/Facial Pain Association Tenth National Conference will be October 10 – 11, 2015 in New York CityTNA is the world’s largest organization providing education and support to patients suffering neuropathic face pain, including trigeminal neuralgia.
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
TNAC Trigeminal Neuralgia Association of Canada
Trigeminal Neuralgia Association UK Facing Pain Together
Trigeminal Neuralgia Association Australia
Trigeminal Neuralgia Support New Zealand
CaTNA Canadian Trigeminal Neuralgia Association
Association Quebecois De La Douleur Chronigue
AFAT (Association Francaise Algies Trigeminal)
Ireland Support Group
Teens with Trigeminal Neuralgia
Alaska Trigeminal Neuralgia
International Resources:
USA: Working Together
Brazil
Finland
United Kingdom
France
Sweden
Netherlands
Canada
TNnME Awareness Facebook Page
For more info or contact, email Toni Saunders
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
TNAC Trigeminal Neuralgia Association of Canada
Trigeminal Neuralgia Association UK Facing Pain Together
Trigeminal Neuralgia Association Australia
Trigeminal Neuralgia Support New Zealand
CaTNA Canadian Trigeminal Neuralgia Association
Association Quebecois De La Douleur Chronigue
AFAT (Association Francaise Algies Trigeminal)
Ireland Support Group
Teens with Trigeminal Neuralgia
Alaska Trigeminal Neuralgia
International Resources:
USA: Working Together
Brazil
Finland
United Kingdom
France
Sweden
Netherlands
Canada
TNnME Awareness Facebook Page
For more info or contact, email Toni Saunders
