Dear Members and Friends,
I hope this message finds you well. With just two days to go until our National Zoom Event on Thursday, 27th February, I want to remind you to join us. We are delighted to welcome Mr George Eralil FRCS(SN), Consultant Neurosurgeon, who will be discussing treatment options for Trigeminal Neuralgia (TN) and facial pain, including medicinal cannabis.
Event Details:
- Date: Thursday, 27th February
- Time: Log in from 7:00 PM; session from 7:30 PM to 8:30 PM
- Topic: Exploring treatment options beyond standard care, including medicinal cannabis
- Questions: Please email your questions in advance to heather.morris@tna.org.uk
- Zoom Link: Please see the mailout to members for the zoom link, or contact us
Encouraging Family, Friends, and Carers to Attend
Understanding TN is just as important for family, friends, and carers as it is for those living with the condition. We encourage you to invite your loved ones to join this session.
One of our members recently shared:
“I never understood what my wife was going through until I joined a national Zoom with our daughter. It opened my eyes to her daily struggles. Attending an online RSG meeting shocked me; I hadn’t realised the volume of pain everyone was enduring. I’m embarrassed I haven’t been more understanding.”
This highlights how valuable these sessions can be—not just for those with TN, but for those around them.
Please Note: this will not be recorded and no recording is allowed.
Surgeons: A Matter of Life or Death – MVD Surgery for Trigeminal Neuralgia
I recently wrote about Surgeons: A Matter of Life or Death, which featured microvascular decompression (MVD) surgery for Trigeminal Neuralgia. Having undergone this procedure myself, I found the programme deeply moving. It captured the challenges and successes of surgery with honesty, offering a rare insight into this complex condition.
A special thank you to neurosurgeon Mr Alessandro Paluzzi and the patient for sharing their journey. Trigeminal Neuralgia is often misunderstood, but their openness helps raise awareness of this life-altering condition.
Please note: The programme contains graphic surgical footage and carries a health warning, as some viewers may find it distressing.
To learn more and watch the programme, please read my article here: Surgeons: A Matter of Life or Death – MVD Surgery for TN.
As we approach Rare Disease Day on 28 February 2025, we want to highlight its importance for our Trigeminal Neuralgia (TN) community.
What is Rare Disease Day?
Rare Disease Day is a global event held every year on 28 February. Its goal is to raise awareness about rare diseases and their impact on patients’ lives. The event brings together patients, families, caregivers, healthcare professionals, researchers, and policymakers to advocate for better diagnosis, treatment, and support for those affected by rare conditions. This year, the theme is “More Than You Can Imagine,” highlighting the significant impact of rare diseases on individuals and their families. It emphasizes that while each rare disease affects a small number of people, collectively, they impact over 300 million individuals worldwide. The theme encourages sharing personal stories to shed light on the challenges faced by the rare disease community.
Why is Trigeminal Neuralgia Considered a Rare Disease? In the UK, a rare disease is defined as a condition affecting fewer than 1 in 2,000 people. Trigeminal Neuralgia fits this definition, with studies indicating an annual incidence of approximately 8 to 12.6 cases per 100,000 people. This low prevalence classifies TN as a rare disease, underscoring the need for increased awareness and research.
The Importance of Rare Disease Day for the TN Community
Participating in Rare Disease Day offers several benefits for those affected by TN:
- Raising Awareness: It provides an opportunity to educate the public and healthcare professionals about TN, potentially leading to earlier diagnoses and improved treatments.
- Advocacy: Aligning with a global movement strengthens our collective voice in advocating for research funding and policy changes that support the TN community.
- Community Support: Engaging in Rare Disease Day fosters a sense of solidarity, connecting individuals and families facing similar challenges. As you can see, we have all our Regional Support Groups (RSGs) available. Please feel free to attend; many are on Zoom, and some are in person. You will receive a warm welcome.
If you to participate in Rare Disease Day by sharing your experiences, attending events, or supporting related initiatives. Together, we can make a meaningful impact and work towards a future where Trigeminal Neuralgia and other rare diseases receive the attention and resources they deserve.
Read Aneeta’s blog on Rare Disease Day here
The Importance of Regional Support Groups
Living with TN can feel isolating, but you are not alone. TNA UK’s Regional Support Groups (RSGs) offer spaces for members to connect, share experiences, and support each other.
Led by volunteers who truly understand the challenges of TN, these groups help combat isolation and address mental health concerns such as anxiety, depression, and agoraphobia. RSGs meet quarterly, offering in-person, online, or hybrid meetings to ensure accessibility for all.
Why Attend an RSG?
- Connection: Meet others who genuinely understand TN and facial pain.
- Shared Knowledge: Exchange practical advice and coping strategies.
- Emotional Well-being: Build a strong support network.
- Up-to-Date Information: Learn about new treatments, research, and self-management techniques.
Carers, loved ones, and supporters are welcome. Their presence can make a real difference in fostering both understanding and support for everyone involved.
Volunteer Opportunity: Birmingham RSG Lead
We are looking for a volunteer to lead an RSG in Birmingham. If you live in or near Birmingham and want to help support others, create a local network, and make a real impact, please contact Phil Churchill via email. phil@tna.org.uk.
New Support Groups
Tony Phillips-Jones – Cornwall and the Isles of Scilly
“Hi, I’m Tony from mid-Cornwall. At 56, I enjoy music and beach walks. After my Trigeminal Neuralgia diagnosis in October 2023 and subsequent Microvascular Decompression surgery in December 2024, I want to help others share their TN journeys and support each other, whether through online or in-person meetings.”
Wendy Bassett – Devon
“I’m Wendy, and I’m passionate about assisting those with TN. Being part of an RSG provides an opportunity to share experiences, access support, and ensure no one feels alone.”
We are also looking for a volunteer to lead a RSG in the Birmingham area. If you are based in Birmingham and would like to help support others with TN, please get in touch. This is a fantastic opportunity to make a real difference, create a strong support network, and help reduce isolation for those living with TN.
If you’re interested in joining a RSG, here is the Diary of Events https://www.tna.org.uk/diary-of-events/ or if you would like to start one in your area, or volunteer in other ways, please contact phil@tna.org.uk
