Anyone suffering from the pain of trigeminal neuralgia & facial pain, please find your Crisis Centre Hotline and keep it handy. We all know the pain, isolation, depression and everything that goes with this horrific disease can be very overwhelming at times so please seek help from family, friends, support groups, Suicide Hotlines or your local Crisis Centre when you think there is no way out. Please hang on to the hope of a better day tomorrow with a cure in your future.
Newfoundland & Labrador Crisis Centres and links to each Province in Canada
http://suicideprevention.ca/thinking-about-suicide/find-a-crisis-centre/newfoundland-labrador-crisis-centres/
Suicide Hotlines in the United States
http://www.suicide.org/suicide-hotlines.html
International Suicide Hotlines
http://www.suicide.org/international-suicide-hotlines.html
Saturday, December 12, 2015
Thursday, June 25, 2015
This is Sami, she lives with Trigeminal Neuralgia. Her letter to The World Health Organization.
This is Sami She was diagnosed with Eustachian tube dysfunction at 10 months old. This has led to 13 sets of ear tubes. When Sami was 7 she had a tumor removed from behind her right ear. It was thought to be a bacterial infection which destroyed her eardrum and required an extensive mastoidectomy.
In 7th grade Sami began having indescribable headaches and face pain. After a last resort referral to a neurologist, Sami was diagnosed with Atypical Bilateral Trigeminal Neuralgia. She is able to control the majority of pain with medication. However she is never pain free. Sami fights through the pain. She chooses the current level of pain over increased side effects of the medication.
Sami is a sophomore in high school. She wears a hearing aid to compensate from the hearing loss she has. She is taking advanced courses and if all goes well she can graduate with her high school diploma and associates degree when she is 17. Sami has dreams of going into the medical field and then going into the mission field to serve those who don't have the same opportunities that she has had with her medical care. She is a well rounded teenager who loves youth group, babysitting and sings on the worship team at church. Sami also has an incredible talent to process her pain through her artwork.
This is what Sami wrote for her school med paper.
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 cause 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."
Besides this Letter to WHO, Sami has done so much to raise TN awareness by telling her story and letting her pics be used to make posters for WHO and TN awareness. As a result of her advocacy work for TN and her other volunteer work she was accepted into The National Honour Society at her school.
Strong young people like Sami, who have to overcome so much to live a normal life, inspire us all. She wants to raise awareness for everyone who lives with the relentless and horrific pain of Trigeminal Neuralgia. So please do whatever you can to help raise awareness and help END THE PAIN.
To sign the petition to The World Health Organization (WHO) http://www.tnnme.com/
In 7th grade Sami began having indescribable headaches and face pain. After a last resort referral to a neurologist, Sami was diagnosed with Atypical Bilateral Trigeminal Neuralgia. She is able to control the majority of pain with medication. However she is never pain free. Sami fights through the pain. She chooses the current level of pain over increased side effects of the medication.
Sami is a sophomore in high school. She wears a hearing aid to compensate from the hearing loss she has. She is taking advanced courses and if all goes well she can graduate with her high school diploma and associates degree when she is 17. Sami has dreams of going into the medical field and then going into the mission field to serve those who don't have the same opportunities that she has had with her medical care. She is a well rounded teenager who loves youth group, babysitting and sings on the worship team at church. Sami also has an incredible talent to process her pain through her artwork.
This is what Sami wrote for her school med paper.
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 cause 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."
Strong young people like Sami, who have to overcome so much to live a normal life, inspire us all. She wants to raise awareness for everyone who lives with the relentless and horrific pain of Trigeminal Neuralgia. So please do whatever you can to help raise awareness and help END THE PAIN.
To sign the petition to The World Health Organization (WHO) http://www.tnnme.com/
To read about the research being done and donate to help fund a cure
http://www.facingfacialpain.org/
http://www.facingfacialpain.org/
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