International Trigeminal Neuralgia (TN) Awareness Day 7 October

I am incredibly proud to unveil our next chapter in the fight against trigeminal neuralgia: the ‘#ShowTN3Fingers’ campaign. As a natural extension of last year’s ‘Face of TN’ initiative, our new campaign aims to expand the conversation around this debilitating condition. We believe that education and awareness are the building blocks of empathy and, eventually, change.

Why ‘#ShowTN3Fingers’ Matters

This campaign isn’t just a hashtag; it’s a learning moment for us all. By showing three fingers, we represent the three main branches of the trigeminal nerve—V1, V2, and V3—each responsible for a unique form of agony. It’s an educational gesture that speaks volumes.

The Medical Community: Your Endorsement Is Crucial

To my esteemed colleagues in the healthcare sector, I urge you to lend your voice and clinical expertise to this cause. Your participation elevates this campaign from a grassroots effort to an authoritative movement.

Hidden No More

Trigeminal neuralgia is often referred to as a ‘hidden disability,’ but with this campaign, we aim to shine a spotlight on it. We want to break down the walls of stigma and loneliness that so many patients face, offering them a beacon of hope.

Join Us: Here’s How

Your participation can take many forms:

Social Media: Use the hashtags #ShowTN3Fingers and #FaceOfTN to make your voice heard.
Video Testimonies: We welcome short reels explaining why you or your loved ones are involved in this campaign. Your story could be the one that educates and inspires others.
Donations: While our primary currency is awareness, financial contributions help maintain our helplines and sponsor regional events aimed at destigmatizing TN. Every donation brings us a step closer to a world free from the anguish of trigeminal neuralgia.
The Time Is Now

As we count down to International Trigeminal Neuralgia Awareness Day on the 7th of October, let’s harness this occasion to drive meaningful change. We’ve been given a platform and a voice; it’s our collective responsibility to use them wisely.

Let’s not miss this chance to act. Together, we can transcend the boundaries of medicine and advocacy to create a more informed and empathetic society. Join us, share the ‘#ShowTN3Fingers’ campaign, and let’s make this International TN Awareness Day a watershed moment in the fight against trigeminal neuralgia.

Looking forward to an impactful day and a brighter future.

Best wishes, Aneeta Prem MBE CEO

Trigeminal Neuralgia Hope

Trigeminal Neuralgia (TN), a neurological condition causing excruciating facial pain, leaves those afflicted with feelings of isolation and despair. However, amidst this, there is hope – the Trigeminal Neuralgia Association (TNA). The charity has been a lifeline for individuals battling TN, providing a supportive and nurturing environment.

Understanding Trigeminal Neuralgia: A Journey of Pain

Trigeminal Neuralgia is characterised by sudden, stabbing facial pain, triggered by seemingly innocent actions like chewing or talking. The intensity of this pain can be overwhelming, leading to immense distress for those experiencing it. It is a rare condition that affects one’s quality of life, leaving individuals in search of understanding and support.

The Trigeminal Neuralgia Association (TNA)

In the midst of this, the Trigeminal Neuralgia Association (TNA) is committed to supporting those affected by TN and face pain.

We provide vital resources, raising awareness, and creating a sense of community among patients, caregivers, and medical professionals.

Transformative Stories of Resilience

Five members   who have found help and strength through TNA:

1. E.L., a resilient TN patient, once felt utterly alone in her battle against the condition. She recalls, “The pain was isolating, but when I discovered TNA’s supportive community, I found a lifeline. The helpline connected me with others who truly understood my struggles. Now, I feel like I belong.”
2. A.J., a strong advocate for regional support groups, recognized the importance of face-to-face interactions. He says, “Meeting in person enhances empathy and understanding among TN patients. Through regional support groups, we share experiences and coping strategies, fostering unity among our members.”
3. M.L., a courageous TN patient, shares how TNA has been a lifeline during her saddest moments. She says, “TNA provided me with coping mechanisms, resources, and most importantly, a support network that helped me endure the pain. With their help, I found strength and resilience.”
4. S.M., an enthusiastic member of TNA, cherishes the joy of being part of a compassionate community. She shares, “TNA’s gatherings and virtual events offer a sense of belonging and a network of friends who offer unwavering support. Community engagement is a powerful tool for healing.”
5. J.T., a compassionate individual who witnessed her loved one’s struggle with TN, decided to make a difference. She emphasises, “Supporting each other in our TN journey is crucial. TNA’s regional support groups have been a source of comfort and understanding. Together, we find hope in the face of pain.”

The Power of Community: A Journey Towards Healing

TNA’s transformative power lies in its ability to foster hope and resilience among those affected by trigeminal neuralgia. By providing empathy, education, and support, the organization has contributed to improved patient care and reduced feelings of isolation. The stigma surrounding TN has also been diminished, encouraging individuals to seek help without hesitation.

Conclusion: Embracing the Light of TNA

Trigeminal Neuralgia can cast a shadow of pain and despair over its victims. However, the transformative power of community, exemplified by the Trigeminal Neuralgia Association (TNA), offers hope. E.L., A.J., M.L., S.M., and J.T.’s stories are testaments to the profound impact TNA has had on those battling TN. By providing support, advocacy, and camaraderie, TNA has become a beacon of light, guiding individuals towards a journey of healing and hope.

FAQs

1. What is Trigeminal Neuralgia? Trigeminal Neuralgia is a neurological condition causing intense facial pain, triggered by everyday actions like chewing or talking.
2. How can I get involved with TNA? You can support TNA by becoming a member, volunteering, or contributing to their initiatives.
3. Are there effective treatments for Trigeminal Neuralgia? Treatment options include medications, surgical procedures, and alternative therapies, though effectiveness varies among individuals.
4. Does TNA offer resources for caregivers? Yes, TNA provides resources and support for patients and caregivers, helping them navigate the challenges of Trigeminal Neuralgia.
5. Can joining TNA’s community make a difference? Absolutely! The supportive and compassionate community within TNA can make a profound difference in the lives of those struggling with TN.

National Volunteers Week

Thank you  Volunteers Assisting the Trigeminal Neuralgia Association

During the esteemed National Volunteers Week, it is my utmost pleasure to convey our appreciation to the dedicated volunteers who wholeheartedly support the Trigeminal Neuralgia Association (TNA) and the facial pain community.

These exceptional individuals,

many of whom bravely face the challenges of Trigeminal Neuralgia (TN) or facial pain themselves, provide invaluable assistance by selflessly manning the helpline, email helpline, and organizing regional support groups.

By diligently attending the helpline and email helpline day in and day out, you become the compassionate voice of empathy.

Offering solace and understanding to those grappling with TN and facial pain. Your personal experiences enable you to provide not only comfort and support but also invaluable firsthand knowledge and insights, guiding sufferers through their darkest moments.

 The volunteers who lead

Coordinate the regional support groups. These dedicated leaders, often enduring these conditions themselves, create safe and inclusive spaces for individuals experiencing facial pain and Trigeminal Neuralgia.

Through your efforts, you bring people together, fostering a sense of community, understanding, and healing.

The helpline, email helpline, and regional support groups serve as lifelines for those seeking support and reassurance.

The empathy, care, and unwavering dedication you demonstrate leave an indelible impact on the lives of individuals affected by facial pain and Trigeminal Neuralgia.

National Volunteers Week, we sincerely hope that the public recognizes the indispensable role you play within our community.

Each call answered every email attended, and every regional support group meeting organized and led to contribute to the cause we ardently champion.

Thank you.  Your selflessness and unwavering dedication have made an immeasurable difference in the lives of countless individuals.

If anyone would consider volunteering for us.

We would love to hear from you. You could help on the telephone or email helpline. Run a Regional support group for fundraising.

We have many great opportunities and we will be grateful for your time and commitment

Please contact us we look forward to welcoming you to the TNA facial pain charity.

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I recently had the privilege of meeting with the members of our Irish family through a virtual Zoom meeting. The experience was truly eye-opening, and it highlighted the importance of face-to-face meetings and the significance of sharing experiences and best practices among the members of our community.

Compassion, Caring, and Sharing among Members  The Zoom meeting with our Irish members was an emotional experience that left a lasting impression on me. The level of compassion, caring, and sharing among the members of the group was truly heartwarming. It was clear that everyone in the group understood the challenges of living with trigeminal neuralgia, and there was a sense of camaraderie and support that only comes from being a part of a community that truly understands what you are going through.

The Importance of Face-to-Face Meetings  While virtual meetings are great for connecting with people from around the world, there is no substitute for meeting in person. The importance of face-to-face meetings was clearly highlighted during our virtual meeting with our Irish members. The members of the group expressed how meeting in person would be essential to ensure that there is the correct support and ability to work together to alleviate isolation and loneliness. It was clear that meeting in person would help the members of our community develop deeper connections, friendships, and a network of support, encouragement, and help. The Importance of Support for anyone with TN is vital.

The Humbling Offer of the Members. At the end of the Zoom meeting, I was incredibly humbled by the offer of the members to formulate their own support group and meet in person with someone taking the lead. This offer highlighted the strength of our community and the willingness of members to help and support each other. Despite the sadness of trigeminal neuralgia crossing the ages, occupations, and backgrounds of its members, together we stand stronger and closer by supporting and helping each other.

Empathy and Encouragement As one member of the group said, “It is people with TN that understand what we go through. Friends and family try, but they can never really understand the amount of pain that we have.” I can completely empathise with that statement, and I feel very encouraged by the strength and resilience of our community. I look forward to meeting the members in Ireland in person over the next few months. To continue to develop the friendships and network of support that are so important in helping us cope with the challenges of living with trigeminal neuralgia.

Meeting with our Irish members of the Trigeminal Neuralgia Association was a powerful reminder of the importance of face-to-face meetings and the value of a supportive community. The experience left me feeling inspired and encouraged, and I am grateful for the opportunity to be a part of such a compassionate and caring community. If you know of any venues that would be suitable for us to meet in person, please let us know so we can start to arrange face-to-face meetings and continue to develop the support and network of encouragement and help that our community provides. The importance of Support and friendship is an important part of our work at TNA-UK.

Message from Aneeta Prem CEO

Message from Aneeta Prem CEO of The Trigeminal Neuralgia Association (TNA)  Facial Pain. TNA is a charity dedicated to providing education, support, and advocacy. Helping those living with trigeminal neuralgia and other facial pain conditions. TNA provides education and support to patients, healthcare professionals, and the general public, increasing awareness and understanding of the condition.

Research is a  priority for TNA. The chairs of the medical board Mr Sinan Barazi and Dr Giorgio Lambru with myself are focused on seeking solutions to help those living with the pain. Through these efforts, TNA hopes to make a real difference in the lives of those affected by this condition.

TNA provides education and support to patients.  healthcare professionals, and the general public, increasing awareness and understanding of the condition. TNA also advocates for the needs of people with trigeminal neuralgia and other facial pain conditions, working with policymakers and healthcare professionals to improve the quality of care and treatment options available to patients.

TNA and Facial pain Helpline. The helpline provides information and support to individuals with Trigeminal Neuralgia and Facial Pain. Volunteers, offer  support advice on how to manage symptoms and provide emotional support to those who need it

Meeting Face to Face. I am humbled to have had the opportunity to meet many of you face-to-face at the TNA National Conference in January and at Regional Support Meetings. I cannot express how vital it is for us to come together and share our experiences and burdens related to facial pain. Seeing the support we offer each other in times of need is heartwarming.

Tea for TNA. There are some exciting things to look forward to, and I urge you to consider hosting a Tea for TNA event to raise awareness and funds for our charity. The funds raised from these events will help us continue to operate and make more people aware of the support we provide. Last year’s Tea for TNA was a tremendous success, with events held in various settings. This includes homes, offices, schools, and even caravans. We encourage all regional support groups to have their own meetings.

Donating  By supporting TNA, you can help us in our mission to improve the lives of those affected by trigeminal neuralgia and other facial pain conditions. Together, we can make a real difference and provide hope for those living with this debilitating condition. So please, join us today and support TNA.

Message from Aneeta Prem CEO

Dear Friends and Members,

Firstly, I hope you all had a wonderful Christmas and managed to be pain-free. I wish you and your friends and family a very Happy New Year.

Our helpline has been a lifeline of support and companionship over Christmas and new year. We are very grateful for our wonderful volunteers that give up their time and expertise to serve.

As we move into 2023 we are committed to offering help and support when you most need it, as well as continuing to grow our membership of supporters. We will face the challenges of TN and facial pain with new enthusiasm and passion and continue raising awareness.

I hope you enjoy reading the Winter edition of your TN Facial Pain Magazine which has arrived (or will do shortly). There are many things to look forward to as the charity moves forward and takes on two new co-chairs of the Medical Advisory Board.
In December I really enjoyed meeting the vibrant London group in person and the lovely Norfolk group. It was a lovely social event where we shared experiences and started to make friendships to reduce the isolation that TNA so often causes. One of our members in Norwich told me that “This is the first time I have ever met anyone else with TN. I left feeling less lonely, valued and strengthened. I would encourage everyone to try and attend and meet, feel supported and share experiences.”

New Year’s Resolutions, and choosing some that will be achievable and sustainable for me! We are launching the One Million Steps for TN challenge and so I am focusing on trying to become more active and fitter through that and hope that you might like to join me in that challenge. I know we can’t all venture out, so racking up steps at home or in a shopping centre counts. You will need a smartphone with a step app or a pedometer and I am going to start with a target of 1,000 steps per day and try to work gradually towards 10,000. I really do hope that friends and family might sponsor this activity and perhaps even join in too!

I have recently become aware of a food sharing App called Olio which can be downloaded onto your phone. The idea behind it is to reduce waste and food that supermarkets and sandwich shops have left over at the end of the day and are unable to give to charities. Food Waste Heroes are Olio volunteers who collect from the shop and then distribute from their house. There is no means of testing, just a wish to reduce food waste. You’re asked only to request what you can use and to be polite! Once you’ve agreed on a pick-up then you go to the Hero’s house and do a doorstep collection.

With my very best wishes for 2023

Welcome to the new Trigeminal Neuralgia Association website, I hope that you will find it more interactive and easier to use.

As we approach the festive season, reflecting back on the last year, we launched tea for TNA which was a lovely opportunity to host a tea party to raise awareness and funds while providing those with Trigeminal Neuralgia the opportunity to meet others with the same condition. I’m proud to announce this pilot scheme raised over £5000 and I’m very grateful for all of you that are baking, organising, and attending. I hope we can grow this in the following years with your help and support.

As you are aware, we were forced to postpone our AGM and national conference, and this is now scheduled for the 14th of January 2023, we are grateful for all of your understanding regarding the postponing due to the rail strike.

October 7th being the national Trigeminal neuralgia day, our face of TN campaign has raised awareness thought provoking questions and being able to visually illustrate how having this affliction feels. We gained international support from people around the world and their families by drawing the Trigeminal nerve on their faces to show their support. In October, this is something we will be pursuing and hopefully will grow into a massive awareness campaign for the sufferers of trigeminal neuralgia.

Your winter magazine is on its way and we have some exciting news inside for you to discover.

Wishing you all a happy Christmas and a happy new year, if you need help and support, please call our freephone number: 0800 999 1899 option 1 to speak to our dedicated volunteers,  or you can email [email protected]

Thank you all for your memberships and your continued donations

As ever

Aneeta Prem

The pain is most felt on one side of the face (unilateral) and usually in the cheek or lower jaw. There may also be pain inside the mouth and often it can feel as if it is coming from one or more teeth, hence many people seek the help of their dentist initially and some may undergo unnecessary dental treatment before getting a correct diagnosis. In other instances, pain can be felt on the entire side of the face or, occasionally, just around the eye and forehead. TN tends to affect the right side of the face more than the left side. Very rarely, it can occur on both sides (this is known as bilateral) but it is rare to have acute pain on both sides at the same time.

Dear Friends and Members,

I hope you are well and able to keep warm.

TNA UK AGM and National Conference.
14 January 2023. Copthorne Tara High Street Kensington, London.

The decision, made by the trustees, to postpone our event was difficult but was necessitated by the announcement of a rail strike scheduled to take place on our original date, the 26th of November 2022.
This meant that most people would not be able to get the train to the national conference and AGM. We are grateful for your understanding and now all the ticket holders have been informed of the new date.

The charity commission has supported the decision to postpone the event as it is in the best interest of the members.

There are a few tickets available and we would love to see you if you are able to attend.

Registration for the AGM   will be from 9 am and refreshments will be available. Please register your interest even if you are only attending for the AGM so we can cater for everyone attending. The AGM will  lead directly into the TNA National Conference;
Our speakers will be neurosurgeons, neurologists, and dentists-all leading experts in the field of   Trigeminal Neuralgia.

I look forward to seeing you at the TNA National Conference and AGM on 14 January 2023.

Volunteering for TNA 
On the 13^th of January 2023, we are holding a training day for our helpline volunteers and Regional Support leaders.
Volunteering can make a real difference in your own life and the lives of people suffering from TN Face pain. There are numerous ways to get involved. If you would like to volunteer for TNA in either of these roles, please get in touch with us so that we can book you a place on the day.
Alternatively,  let us know what time and skills you can give. so that we can match people up with their need.
Contact [email protected]

Befriending Helpline 
I am very proud to announce our new Befriending service.
If you are feeling isolated, as having TN can be incredibly lonely for many of us,
being able to talk to the same person regularly to build a rapport has been found too. Be helpful.
If you would like to use this service, please get in touch.  The contact details are below.

Contact

0800 999 1899 Option 1

With warmest regards,
In friendship

Aneeta

Trigeminal Neuralgia Awareness Day October 7 2022 

Trigeminal Neuralgia is arguably the most painful condition a human being can endure on a continuing basis. I know this because I’m not just TNA-UK CEO – I’m a sufferer as well.
That’s why, on TN Awareness Day, I wanted to use this special opportunity to inform and educate medical professionals, such as dentists, doctors, and nurses, many of whom are not currently aware of the Trigeminal Neuralgia condition – its causes and effects.
You may already have seen that I recently launched a new campaign entitled, #faceoftn, to highlight the condition.

You yourself, or friends and family are invited to join me to draw the representation of the branching trigeminal nerve on the face (not the side experiencing the pain please) in order to shine a light on this hidden, and therefore unnoticed, condition. Please send us your photos and post on social media using the hashtag #faceoftn
You can also ask everyone you know to wear the TNA colour, Teal.
As you see all of these photos posted by other members, you’ll see that you are not alone.  You don’t have to fight this battle on your own.  Together we can be much stronger and more effective.

That’s why I’m delighted our membership has more than doubled since  the last year and a half.
We have a freephone helpline and email help address, answered mainly by fellow sufferers, who truly understand and can give meaningful advice.  Their service is not just for you, the sufferer, but also to assist those who care for you and care about you.
Our Regional Support Group are regular meetings held around the country to enable TN sufferers to meet fellow sufferers, learn from fellow sufferers and care for fellow sufferers in a comfortable environment. As support for TNA-UK has grown we have been able to gain funding to increase the number of our meetings, with comfortable rooms, refreshments.

At TNA-UK. we really want to make a difference not only with the relief of pain but, hopefully, to find a cure.

Text: TNA to 70470 to donate £5.00
If you wish to donate a different amount Text TNA and the amount in a figure ( TNA3 =£3  TNA10 =£10  TNA15 =£15  TNA20 maximum of £20) 

£10 will help towards our helpline  

£20 will pay a membership for someone who is in financial difficulty but needs our help 
With warmest regards

Aneeta 

Aneeta Prem