Rare Disease Day 2023 28th of February

Introduction

February 28th marks Rare Disease Day, where more than 600 events worldwide are organized to raise awareness about rare diseases, including Trigeminal Neuralgia. Trigeminal Neuralgia is a rare and excruciatingly painful disease that affects approximately 1 in every 15,000 people.

marks living with a Rare Disease and Trigeminal Neuralgia:

The Painful Reality of Living with a Rare Disease

Rare Disease Day 2023 for those with Trigeminal Neuralgia, is a rare neurological disorder.  That causes sudden and severe facial pain. This excruciatingly painful condition affects approximately 1 in every 15,000 people worldwide, and yet many people have never even heard of it.

We at TNA Uk are here to shed light on this debilitating disease and the challenges that come with living with a rare disease.

From the impact on daily life to the challenges in diagnosis and treatment, Trigeminal Neuralgia presents a painful reality for those who live with it.

The Painful Reality of Living with Trigeminal Neuralgia

Trigeminal Neuralgia causes sudden and intense facial pain, which is often described as an electric shock or stabbing sensation. These attacks can last from a few seconds to several minutes and can occur multiple times a day. Unfortunately, even everyday activities such as chewing, talking, or even a slight breeze on the face can trigger an attack.

Living with Trigeminal Neuralgia can be incredibly difficult. The pain can be so severe that patients may avoid basic self-care routines such as brushing their teeth or shaving. The unpredictable nature of the disease can also lead to depression, anxiety, and social isolation. Patients may struggle to maintain relationships or participate in social activities, which can lead to feelings of loneliness and hopelessness.

Challenges in Diagnosis and Treatment

Diagnosing Trigeminal Neuralgia can be challenging, as there is no specific test for the disease. Patients may undergo a series of tests to rule out other conditions, and a definitive diagnosis may take months or even years to obtain. This can be incredibly frustrating for patients who are experiencing intense pain and are seeking answers and relief.

Treatment options for Trigeminal Neuralgia include medication, surgery, or a combination of both. Medications such as anticonvulsants or muscle relaxants can help reduce the frequency and intensity of attacks, but they may also cause side effects such as dizziness, drowsiness, and nausea. Surgery, such as Microvascular Decompression or Gamma Knife Radiosurgery, can provide long-term relief but carries its own risks.

The Importance of Fundraising for Trigeminal Neuralgia Association UK

Trigeminal Neuralgia Association UK is a charity that provides support and information to those affected by Trigeminal Neuralgia. They also work to raise awareness of the disease and fund research into finding better treatments and, ultimately, a cure.

Fundraising for Trigeminal Neuralgia Association UK

is incredibly important to support their vital work. Donations can help to fund research into better treatments and support services for patients and their families. Fundraising events such as sponsored walks or runs, charity auctions, or online campaigns can help to raise awareness of the disease and the challenges faced by those who live with it.

Rare Disease Day 2023 Trigeminal Neuralgia is a rare and debilitating disease that can significantly impact a person’s quality of life. From the challenges in diagnosis and treatment to the impact on daily life and emotional well-being, living with Trigeminal Neuralgia presents a painful reality for those who are affected. It is vital that we continue to raise awareness of the disease and support organizations such as Trigeminal Neuralgia Association UK in their mission to improve the lives of those affected by this condition.

Trigeminal Neuralgia Conference

Empowering TN Sufferers with Practical Solutions for Pain Management

Trigeminal Neuralgia Conference in January 2023 was a life-changing event for Trigeminal Neuralgia (TN) and facial pain sufferers. This conference brought together renowned experts in the field of TN. Providing invaluable insights into the latest developments in treatment and management. If you suffer from TN, the information presented at this conference is not to be missed.

In this article, we’ll delve deeper into the conference and highlight the practical solutions for TN pain management. The empowering experience for attendees, and the commitment of TNA to expand its focus to include facial pain.

Expert Speakers Provide Practical Solutions for TN Pain Management

The conference was expertly chaired by Aneeta Prem MBE and the joint chairs of the medical advisory board, Dr Lambru and Mr Barazi. The event was well-organized, and delegates were treated to an inspiring and informative day of presentations. The quality of the speakers was impressive, and they provided practical solutions for TN pain management.

“Giorgio Lambru Is simply the best thank you for expanding TNA-UK to include facial pain!’

“Mr Sinan Barazi Consultant Neurosurgeon a fantastic compassionate surgeon and a great speaker “

Dr Lambru and Mr. Barazi, renowned experts in the field of TN, offered invaluable insights into managing TN pain. Linda Fisher, a Chartered Psychologist, provided practical tips on how to cope with the emotional impact of TN, while Mark Weatherall, a Consultant Neurologist, gave an informative presentation on the neurological treatment of TN.

The conference provided practical solutions for TN pain management, leaving attendees feeling better equipped to manage their TN pain. As one delegate put it, “The information presented at the TNA conference has changed my life. I feel better equipped to manage my TN pain, and I’m grateful for the support I received from other attendees.”

An Empowering Experience for TN Sufferers

The TNA conference was an empowering experience for TN sufferers. Attendees learned from leading experts in the field.  Delegates felt inspired to take control of their pain. As another delegate said, “The TNA conference was an empowering experience. The knowledge and expertise displayed by the speakers were impressive. I left feeling more informed and better equipped to manage my TN pain.”

TNA Expands Its Focus to Include Facial Pain

In addition to the wonderful insights provided by the TNA conference attendees were thrilled to hear that the Trigeminal Neuralgia Association (TNA) has expanded its focus to include facial pain as part of its work. This decision was met with great enthusiasm, as it recognizes the wide range of pain experiences that individuals with facial pain endure.

Furthermore, four individuals who suffer from TN and facial pain were delighted that research is at the heart of what TNA wants to do. They recognized that research is essential for discovering new treatments and ultimately finding a cure for TN and facial pain. This focus on research shows that TNA is dedicated to providing the most up-to-date and effective treatment options for its members.

TNA Continues to Support Members

Attendees were also pleased to learn that TNA will continue to support its members with its helpline and regional meetings. The TNA helpline is a vital resource for those who need support and advice.

The regional meetings provide an opportunity for members to meet others who are going through similar experiences, share stories, and exchange practical tips on how to manage their pain.

Conclusion

In summary, the TNA conference was a great success, and attendees left feeling empowered, informed, and supported. The decision to include facial pain as part of TNA’s work, the focus on research the continued support through the helpline and regional meetings show that TNA is committed to improving the lives of individuals with TN and facial pain.

feedback

Life-Changing Experience

JH “found the TNA conference to be a life-changing experience. They were impressed by the organization and the quality of the speakers. Who provided insightful information on managing TN pain. Specifically mentioned Aneeta Prem, CEO, as a standout speaker who inspired them with her knowledge and passion for helping those with TN.

Invaluable Insights from Dr Lambru and Mr Barazi

DS was grateful for the opportunity to learn from experts in the field such as Dr Lambru and Mr Barazi. They are both ‘Simply the Best”

They found their presentations to be well-structured and informative, providing them with invaluable insights into managing their TN pain.

Inspiring Presentations by David Martin, CEO of MS Trust

DS was inspired by David Martin’s presentation on the role of advocacy in improving the lives of those with TN. As CEO of MS Trust and Chair of the Neurological Alliance, Martin offered a unique perspective on the challenges faced by TN sufferers and how they can be overcome through advocacy and support.

Linda Fisher’s Insights into Psychosocial Support

SP found Linda Fisher’s presentation on psychosocial support for TN sufferers to be particularly insightful. As a Chartered Psychologist, Fisher offered practical tips on how to cope with the emotional impact of TN, as well as the importance of seeking support from friends, family, and professionals.

Uke Cascarini’s Expertise in Maxillo-Facial Surgery.

TL was impressed by the expertise of Uke Cascarini, a Consultant Maxillo-Facial Surgeon. Cascarini provided detailed information on surgical options for TN, including the latest advancements in the field. The delegate found the presentation to be informative and helpful in understanding their treatment options.

Mark Weatherall’s Insights into Neurological Treatment

LZ stated appreciated Mark Weatherall’s insights into the neurological treatment of TN. As a Consultant Neurologist, Weatherall provided a comprehensive overview of the various treatments available, including both surgical and non-surgical options. LZ found the presentation to be both educational and inspiring.

Trigeminal Neuralgia Conference

Feedback

“Compassionate Support from TNA Speakers” “I was touched by the compassionate support they received from the TNA speakers. They appreciated the empathy and understanding displayed by the experts in the field and felt that their struggles with TN were being taken seriously.”

“Insightful Discussions on Coping Strategies”: “appreciated the insightful discussions on coping strategies for TN sufferers. They found the presentations on psychosocial support and mindfulness to be particularly helpful in managing their pain and improving their quality of life.”

“Inspiring Stories from Other TN Sufferers” ‘I was inspired by the stories shared by other TN sufferers at the TNA conference. They appreciated the opportunity to connect with others who understand the challenges they face, and felt a sense of community and support as a result”.

“Outstanding Organization and Planning”: was impressed by the outstanding organization and planning of the TNA conference. They appreciated the seamless flow of the event and the attention to detail and felt that their experience was greatly enhanced as a result.”