Carolina Arruda, young woman with the worst pain in the world Reproduction/Instagram The routine of those living with chronic pain in Brazil gained a new perspective with the sanction, in June, of the law that established guidelines to expand assistance to these patients. The standard provided for comprehensive care through the Unified Health System (SUS), made teaching about chronic pain mandatory in health courses and created the National Day for Awareness and Coping with Chronic Pain, celebrated on July 5th. For those who face one of the most disabling diseases on a daily basis, the expectation is that the changes will reduce years of suffering until diagnosis and appropriate treatment. This is the case of Carolina Arruda, resident of Bambuí, in the Center-West of Minas Gerais. For almost 13 years, she has lived with trigeminal neuralgia, a neurological disease that causes intense and disabling pain in the face and is often described by experts as one of the most painful conditions in medicine. ? Click here to follow the g1 Central-West of Minas channel on WhatsApp Carol Arruda in a moment of crisis during treatment for trigeminal neuralgia Carolina gained national recognition by sharing her routine on social media and giving interviews about the challenges of living with the disease. In 2024, her story had repercussions after she made public her decision to seek euthanasia abroad because of the intensity of the pain and the lack of response to available treatments. Since then, she has also been active in raising awareness about trigeminal neuralgia and other chronic pain conditions. For Carolina, the new legislation represents a milestone for millions of Brazilians who live with similar diseases. "If this guarantee really gets off the ground, it will completely change the lives of those who live with chronic pain. Today, many people spend years going from appointment to appointment, taking exams, trying different treatments, without getting organized care. Pain ends up being treated in isolation, when, in fact, it affects all areas of life," he said. In the case of trigeminal neuralgia, Carolina states that it is common for the patient to go through different medical specialties until they find a professional who identifies the disease. "I have lived with trigeminal neuralgia for almost 13 years and I know how exhausting it is to fight not only against the pain, but also to access the right professionals, medications and treatments available." According to Carolina, this difficulty causes many patients to give up seeking care. "Many people end up hearing that there is nothing more to do or that there is no treatment. I see people coming to me completely lost, without a diagnosis and without knowing which path to take. Truly comprehensive care can reduce this waiting time, avoid years of suffering and bring a better quality of life." Lack of preparation still delays diagnoses Among the main problems faced by patients, Carolina points out the lack of specific training among health professionals on chronic pain. To change this scenario, the sanctioned law determines the inclusion of teaching about chronic pain in the curriculum of health courses. In her opinion, many diseases still receive little attention during graduation. This contributes to late diagnoses and inadequate treatments. "Without a doubt, the lack of preparation is still one of the biggest challenges for those living with chronic pain. Many of these diseases are little addressed during professional training. This means that many patients take years to receive a diagnosis." According to Carolina, the lack of preparation of professionals is also noticed in emergency care. "During an intense crisis, many people arrive at the emergency room and the team does not always recognize that that pain is related to a specific chronic condition. Sometimes, the patient is still viewed with suspicion because they need medication to control pain that is part of the disease itself." Carolina Arruda has trigeminal neuralgia and shows her treatment routine on social media Reproduction/Instagram Campaigns help combat prejudice The new legislation also establishes an annual national awareness campaign. For Carolina, the initiative can help reduce the prejudice faced by people who live with invisible illnesses. "Those who live with chronic pain face two challenges: the pain itself and the difficulty of making people understand that it exists. As many of these diseases are invisible, it is still common to hear that it is exaggeration, anxiety or that the person needs to be stronger." Carolina believes that expanding access to information can help change this scenario. "The campaigns help family members, employers and even healthcare professionals understand that chronic pain is a health condition and not an exaggeration." Progress depends on implementation Carolina Arruda has trigeminal neuralgia and will implant electrodes that can block transmission of the 'worst pain in the world' to the brain Personal archive/Carolina Arruda Although she considers the law an important advance, Carolina stated that the main challenge now is to ensure that the planned measures are put into practice. "It shows that chronic pain is finally starting to occupy the space it deserves within public health policies. But the challenge starts now. The law will only make a difference when it actually comes to fruition", he highlighted. Finally, Carolina reinforced that the main goal must be to guarantee equal access to treatment for all people with chronic pain. "It is not enough to recognize chronic pain. It is necessary to ensure that the patient can access specialists, medications, treatments and a multidisciplinary team, regardless of where they live, whether in the capital or in the countryside, like me", he concluded. READ ALSO: 'Worst pain in the world': understand the case of the young woman who fights trigeminal neuralgia Young woman with 'the worst pain in the world' returns to veterinary medicine school Who is Carolina Arruda? Carolina Arruda, 28 years old, is from São Lourenço, in the south of Minas, and lives in Bambuí, in the Center-West. A veterinary medicine student, married and mother of an 11-year-old girl, the young woman began to feel the pain at the age of 16, during her pregnancy and recovery from dengue fever. She gained national notoriety in July 2024 when she revealed her desire to resort to assisted suicide in Switzerland, a country where the procedure is legal, due to the pain and exhaustion caused by the disease. What is trigeminal neuralgia? Trigeminal neuralgia is a rare neurological disease that causes intense pain in the face, often compared to electric shocks. The condition affects the trigeminal nerve, responsible for facial sensitivity, and crises can be triggered by simple actions, such as talking, chewing or brushing your teeth. The disease affects less than 0.3% of the world's population. In Carolina's case, the condition is even rarer, as she feels continuous pain on both sides of her face. When did the symptoms start? Carolina began to feel her first pain at the age of 16, during pregnancy and while recovering from dengue fever. At first, the symptoms were mistaken for dental problems. Only after detailed examinations did doctors confirm the diagnosis of trigeminal neuralgia. The delay meant that proper treatment began later. What was her life like before her diagnosis? Before the onset of the disease, Carolina studied and worked normally. She had academic and professional plans, but had to interrupt them when the pain attacks intensified. How does the disease affect her routine? Trigeminal neuralgia means that simple activities, such as brushing your teeth, talking or chewing, can cause severe pain. What treatments has she already had? Carolina underwent different treatments, including medication, radiosurgery sessions, physiotherapy and trigeminal nerve decompression surgery. The results, however, were temporary, and the crises returned. The most recent procedure was deep sedation, performed with the aim of "resetting" the brain and improving the response to medications. According to her, there was no improvement. On the contrary, the symptoms became even more intense, and Carolina decided to take a break from medical treatments to prioritize emotional care. Will Carol continue in treatment? Carolina stated that she does not intend to undergo new surgeries or experimental procedures, but will continue with the treatments already implemented, such as the drug pump and electrodes. According to the doctor in charge, further invasive interventions have been ruled out. The priority now is to preserve comfort, functionality and respect the patient's wishes. VIDEOS: see everything about the Center-West of Minas