Children and TN


Children and Trigeminal Neuralgia

I wanted to share the remarkable story of Grace, the 11-year-old girl diagnosed with TN.

Grace’s Journey

It’s very rare for young children to be diagnosed with trigeminal neuralgia, a condition primarily known for affecting adults. Yet, as members of the Trigeminal Neuralgia Association (TNA), we are deeply moved by the case of Grace, an 11-year-old from Monifieth, Scotland. Her battle with this debilitating disease highlights its unpredictability and severity.

Early Symptoms

Grace’s ordeal began in early 2022 with a tingling sensation below her right eye, which rapidly escalated into severe, disruptive attacks. Her father, Garry Miller, describes these episodes as “electric shock-type attacks,” highlighting the extreme nature of her pain: “The pain is so severe that even crying makes it worse,” he notes. This statement paints a vivid picture of Grace’s daily struggles and emphasises the complexities involved in diagnosing and managing this condition in children.

Family Support

Garry’s reflection on their family’s experience points to the broader implications for support: “All we can do is be there for her, sit beside her and hold her hand,” he says. Such simple yet profound support is vital and reflects the broader role that our community can play in providing comfort to those in need.

Inspiring Actions

Grace’s story will have a huge impact on our charity, especially through shared experiences like those of Molly Dyer, who underwent Microvascular Decompression (MVD) surgery as a teenager. She has been a source of inspiration, having addressed our conference in London, underscoring the resilience needed to fight this condition.

Fundraising Efforts

Grace has responded to her challenges with remarkable initiative, organising a fundraiser at her school. She has been making friendship bracelets to raise funds for us at Trigeminal Neuralgia Association UK, which her father proudly shares. This solidarity from such a young member of our community is not just inspiring; it serves as a call to action for all of us.

Expanding Our Support: The Young Person’s Gift Pack

Given Grace’s heroic efforts, we are motivated to do more for our younger members. We are introducing a ‘Young Person’s Gift Pack,’ designed to provide comfort and resources tailored to our paediatric members. This pack will include educational materials about TN and personalised messages of support from our community, ensuring that young sufferers like Grace and her family feel supported and connected. Our Joint Chairs, Mr Sinan Barazi and Dr Giorgio Lambru have updated our young people’s guide for children with TN. Please click the button below.

TNFP: What We Need to Do as a Charity

Grace’s story reminds us why our work is so crucial, and the difference we can make in the lives of those affected by TN and facial pain, irrespective of their age. As we unite to increase our fundraising activities, expand our research into TN, and ensure that these families receive the resources and community support they critically need, Grace’s upcoming school event is very moving. I feel truly humbled by her incredible efforts.

Our Mission

TNFP aims to foster a future where no child has to endure such intense pain alone.

Warmest regards,
Aneeta
Aneeta Prem MBE
CEO

Young People’s Guide by Mr Sinan Barazi & Dr Giorgio Lambru

Monifieth girl, 11, suffers ‘electric shock attacks’ on face due to rare condition.

“Supporting research for Trigeminal Neuralgia (TN) is crucial. By contributing to Grace’s Campaign, you’re doing more than just donating; you’re playing a key role in making a real difference. All funds raised will be used to support children suffering from this condition, reinforcing our commitment to their brighter future.”

Loneliness

Loneliness in the Age of Trigeminal Neuralgia

Loneliness can be a debilitating experience, one that is only intensified by the presence of chronic conditions such as Trigeminal Neuralgia (TN). This neurological disorder causes extreme, sporadic, sudden burning or shock-like facial pain that can attack even with mild stimulation of the face. Such pain not only affects physical health but also deeply impacts mental and social well-being, often leading to profound loneliness.

Understanding Trigeminal Neuralgia (TN)

Trigeminal Neuralgia, often described as one of the most painful conditions known to medical science, affects daily activities and personal interactions, making it difficult for sufferers to maintain social connections. The unpredictable episodes of pain lead to fear of triggering an attack, which can isolate individuals just when they need social support the most.

The Dual Burden: Pain and Isolation

For many, like myself, living with TN is like being in a constant battle with an invisible enemy. The pain is not just a physical symptom; it’s a barrier to social outings, conversations, and even expressing feelings to family members. This can lead to a significant withdrawal from social life, encapsulating the sufferer in a cycle of pain and solitude.

As one community member poignantly shared, “Experiencing pain, silently screaming, is the most lonely thing. I often wish I was not here, but I know if I need to, I can pick up the phone or email and someone will care.”

Another individual explained, “My family doesn’t want me to talk about my pain, which makes it even harder. Having the Friendship Line to call and talk about what I’m going through has been a lifesaver.”

The Role of TNA UK in Combating Loneliness

TNA UK, recognising the dual challenges of pain and loneliness, offers a range of services to reduce isolation. Their initiatives include the Friendship Line, a pioneering service designed to provide regular, supportive contact to those feeling isolated due to TN.

Innovative Solutions: The Friendship Line Initiative

The Friendship Line operates on a simple premise: regular, scheduled calls from trained volunteers to offer conversation, companionship, and emotional support. This service has become a lifeline for many, providing not just a distraction from pain but also a connection to a community that understands their experiences. 08009991899

“I called the helpline regularly for support and someone to talk to. I was offered the chance to have a regular call with one of the great volunteers every week. I would get a call for about 45 minutes. It was something to look forward to. It has made me feel less lonely and sad,” one user shared, highlighting the profound impact of this initiative.

Engaging in Community: Regional Support Meetings

Another critical initiative by TNA UK is organising regional support meetings. These gatherings provide a safe space for individuals to meet others who ‘get it,’ understand the challenges of living with TN, and can offer empathy and advice that is grounded in personal experience.

Attending these meetings has been transformative for many. “Meeting people in the same boat, experiencing facial pain that they understand, has helped tremendously,” noted a participant.

Family Dynamics and Chronic Pain

Discussing chronic pain within families can be challenging. Many sufferers feel that their families don’t want them to talk about their pain, which can exacerbate feelings of isolation. TNA UK provides resources and guidance on improvingLoneliness family communication and understanding of TN, fostering a more supportive home environment.

One member shared, “My family doesn’t understand my pain, and they often don’t want to hear about it. This isolation at home makes the support from TNA UK even more crucial.”

Voices from the Community: Real Stories of Struggle and Support

Hearing from those who have benefited from TNA UK’s services underscores the importance of community and support in managing loneliness. Personal anecdotes reveal the depth of struggle and the relief found in connecting with others who understand.

Expert Opinions: Psychological Perspectives on Loneliness

Psychologists agree that effective support networks are crucial for managing loneliness in chronic pain sufferers. Therapeutic approaches that focus on building these networks can significantly improve mental health outcomes for those with TN.

Integrating Technology: Enhancing Connection through Innovation

Technological solutions, such as virtual support groups and online forums, offer additional ways for TN sufferers to stay connected. These innovations hold promise for further reducing isolation in chronic illness communities.

Call to Action: How You Can Help

Supporting TNA UK can take many forms, from volunteering to participating in fundraising efforts. Encouraging those in need to reach out and take advantage of available resources is equally important.

Loniness Action week 10-18th June 2024

TNA UK’s comprehensive approach to tackling loneliness among those with Trigeminal Neuralgia is a beacon of hope. Through their helpline, the Friendship Line, and support meetings, they provide essential connections that foster a sense of community and understanding, crucial for combating loneliness and improving the quality of life for those with TN.

National Volunteers’ Week

Dear Volunteers,

Thank you to All the Volunteers

As we celebrate National Volunteers’ Week, I want to extend my thanks to all the incredible volunteers at the Trigeminal Neuralgia Association UK (TNA UK). Many of you are not only dedicated volunteers but also brave individuals living with trigeminal neuralgia (TN) yourselves. Your commitment and resilience are truly inspiring.

Helpline and E-Helpline Volunteers

A special thank you goes to those who tirelessly staff our helplines and e-helplines. You offer crucial support and information to those in need, providing a lifeline to many and ensuring that no one has to face TN alone.

Regional Leaders

Our regional leaders deserve recognition for their outstanding work. You not only run regional meetings but also provide ongoing support to members in your areas. Your dedication to fostering a supportive community is invaluable.

Friendship Line Volunteers

A huge thank you to those who have manned the friendship line. Your compassion and willingness to listen have made a significant impact. In many cases, you have saved lives.

Medical Advisory Board

We also owe a debt of gratitude to our brilliant Medical Advisory Board. Your expertise and guidance are instrumental in our mission. You help us navigate the complexities of TN with confidence and clarity.

Trustees

Lastly, I want to thank our trustees for their support and dedication. You improve the lives of those with facial pain and trigeminal neuralgia.

Call for Volunteers

Volunteering is at the heart of TNA UK. We are always in need of more passionate individuals to join us. If you are interested in making a difference, please get in touch. We need you to help us continue providing vital support to those affected by TN. https://www.tna.org.uk/contact-us/

Volunteers' Week

Final Thanks

Thank you once again to all our volunteers for your incredible contributions. You are the backbone of our organisation, and we are deeply grateful for everything you do.

Warm regards,

Aneeta

Aneeta Prem MBE JP
CEO, Trigeminal Neuralgia Association UK