The Harrowing Reality of Trigeminal Neuralgia
The story of Carolina Arruda, a 27-year-old Brazilian veterinary student suffering from bilateral trigeminal neuralgia, has recently captured global attention. Arruda’s battle with this debilitating condition, which began at the tender age of 16, underscores the severe impact trigeminal neuralgia can have on an individual’s life.
Understanding Trigeminal Neuralgia
Trigeminal neuralgia, often referred to as the “suicide disease”—a term we neither endorse nor oppose but acknowledge may upset some due to the extreme pain involved—is a chronic pain condition that affects the trigeminal nerve, which carries sensation from the face to the brain. This rare condition, affecting about four out of every 100,000 people, is characterised by intense, shock-like pain in the face. Furthermore, daily activities such as eating, brushing teeth, or even a gentle breeze can trigger excruciating pain. Arruda describes her experience as being akin to receiving 220-volt electric shocks on both sides of her
Carolina’s Struggle
Carolina Arruda’s journey is a poignant reminder of the relentless nature of trigeminal neuralgia. Despite undergoing multiple surgeries and experimenting with various treatments, she has found no lasting relief. Her description of the pain – a constant, unyielding presence – highlights the profound physical and emotional toll this condition can exact.
“There are times when all I can do is lie down and curl up in a corner and wait for this pain to go away, but it never really goes away. I live with this pain 24 hours a day,” Arruda shared with CNN Brasil and media
The Decision for Euthanasia
Faced with the unbearable pain and limited treatment options, Carolina has made the heartbreaking decision to seek euthanasia in Switzerland, where the procedure is legal. Her story shows the desperation and anguish trigeminal neuralgia can inflict. “The decision to have euthanasia was the hardest decision and, at the same time, the clearest for me,” she said. “It’s not a lack of love for life or the people around me, it’s simply a cry for compassion, for a dignified end”
Empathy and Awareness
Carolina’s story serves as a powerful call to action for greater awareness and empathy towards those suffering with chronic pain. As the CEO of TNA UK and TNFP, Aneeta Prem, stated “I urge everyone to recognise the immense challenges faced by individuals with trigeminal neuralgia. “The pain of trigeminal neuralgia is unimaginable and invisible. We must listen to and support those who suffer from this devastating condition. Hear their voices. Their pain needs to be acknowledged,”
Reaching Out for Support
At TNA UK / TNFP, we are committed to providing support and hope to those affected by trigeminal neuralgia. We encourage individuals to reach out and utilise our various support systems, including:
- Helpline: Our dedicated helpline is available to offer emotional support, information, and guidance to those in need. Trained volunteers are ready to listen and provide assistance. Call us on our freephone helpline at 0800 999 1899 option 1 and press option 3 for the Samaritans.
- E-helpline: For those who prefer digital communication, our e-helpline provides a confidential platform to discuss your concerns and receive support via email at [email protected]
- Friendship Line: Sometimes, just having someone to talk to can make a world of difference. Our friendship line connects individuals with volunteers who offer companionship and a listening ear.
- Regional Meetings: We organise regular Regional Support meetings where individuals can come together, share their experiences, and find comfort in a supportive community. These meetings provide a safe space to discuss challenges and further learn from one another.
Encouraging Dialogue and Community
By fostering open dialogue and building a strong community, we aim to alleviate the isolation often felt by those suffering from trigeminal neuralgia. As much as your participation in these initiatives helps you, it also supports others who may be struggling. Together, we can create a network of compassion and understanding.
The Path Forward
For those battling trigeminal neuralgia, the importance of continued research into more effective treatments and pain management strategies. It also highlights the need for robust support systems, both medical and emotional, to help individuals navigate the profound challenges posed by chronic pain.
The importance of empathy and advocacy. By raising awareness and supporting research, we can hope to improve the lives of those suffering from trigeminal neuralgia and other chronic pain conditions. The story of Carolina Arruda is not just a tale of suffering but a call for a more compassionate and understanding world.
Reach out to us at TNA UK and TNFP if you or someone you know is affected by trigeminal neuralgia. Together, we can make a difference. Your donations can help fund critical research and support services, bringing hope to those in pain.
