Aneeta Prem CEO Update May 2024

Dear Friends and Members

I hope you are keeping well.

Today, on World MS Day, we unite to raise awareness about Multiple Sclerosis (MS) and the unique challenges faced by those living with both MS and Trigeminal Neuralgia (TN). This year’s theme, “My MS Diagnosis,” highlights the importance of early and accurate diagnosis and building supportive communities (World MS Day) .

MS is a chronic condition affecting the central nervous system. It occurs when the immune system mistakenly attacks the protective sheath around nerve fibres, causing symptoms such as fatigue, difficulty walking, and muscle spasms. MS is often diagnosed in people in their twenties and thirties and is a lifelong condition.

Approximately 2-5% of individuals with MS will develop TN, experiencing intense facial pain that can significantly impact daily life Understanding and managing these overlapping conditions can be overwhelming.

You may remember we had a national Zoom meeting with the former CEO of the MS Trust, David Martin, who also served as the Chair of the National Neurological Alliance. He discussed the connection between MS and TN, providing valuable insights and fostering a greater understanding of these conditions.

“I have had MS for a number of years, and now I sadly have TN too. I am so grateful for the friendship and support I receive from all of you at TNA. You have supported me with my membership fee and helped me make friends at my regional meetings. I feel I have some hope. Thank you.” –Susan

At TNA UK, we are committed to supporting you through regional meetings, Zoom meetings, and helplines. Our charity provides essential guidance and encouragement to those dealing with the dual challenges of MS and TN. Being part of the Neurological Alliance, I work closely with the MS Trust to enhance our support network. Together, we strive to offer the best resources and assistance. Let’s stand together this World MS Day.

Congratulations on a Great Achievement: “A Dad and his Lad”

We are delighted to share the recent success of Anthony and his father, who completed the Great Manchester 10k on the 26th of May. Anthony finished the race in an impressive 44 minutes, while his father, a Trigeminal Neuralgia (TN) survivor, completed it in 1 hour and 10 minutes. Their dedication is fantastic.

Their fundraiser has almost reached its target. Your support can help them achieve their goal. Please consider donating to their fundraiser.

Anthony, 27, and his 65-year-old dad are raising money for our charity. A few years ago, Anthony’s dad suffered from severe facial pain caused by TN, a condition that affects many but is often misunderstood. Trigeminal Neuralgia leads to intense, electric shock-like pain, severely impacting daily life.

Anthony’s father has managed his condition, but many others continue to suffer in silence. Their fundraiser aims to raise awareness and support TNA UK’s efforts in research and support for those affected by TN.

Great photos of father and son in their T-shirts raising awareness and funds.

Warm regards,

Aneeta

Northern & Republic of Ireland Regional Support Group Meeting

Thursday 6th June 7pm

I am really looking forward to hosting the Ireland support group meeting on Zoom.

It is a chance to catch up and go through what matters to you. Please contact [email protected] for the link to the meeting. Joining meetings is an important part of coping. It doesn’t need to be just you—your carer, family, and friends are welcome to join in too, to have a better understanding.

Join Our Regional Support Group Meeting

Attend a local TNA support group meeting to connect with others, share experiences, and access valuable advice on managing Trigeminal Neuralgia (TN) and facial pain. These meetings, held both in-person and via Zoom, are crucial in reducing isolation and providing emotional and practical support.

Benefits of Attending:

Meet others with TN and build a supportive network. Learn effective management strategies from specialists and experienced members.

Sharing your experiences can help lessen the feelings of isolation.

We hope you able to join a meeting, whether in person or online, your participation makes a difference.