Multiple Sclerosis (MS) is a complex neurological condition that impacts an estimated 2.8 million people worldwide. This week we explore the science behind MS, treatment options, and the lived experiences of those navigating life with this chronic illness. Multiple Sclerosis (MS) has been called "the disease of 1000 faces" for good reason - it manifests differently in almost every person it affects. Understanding MS: The Science Behind the Disease Dr. Zied Tayeb, neuroscientist and CEO of MyelinZ, explained the fundamental mechanism of MS in terms anyone can understand: "The brain communicates using electrical signals. These signals travel from one neuron to another through axons, which are protected by myelin sheets that help accelerate the transmission of these signals. In MS, the immune system mistakenly attacks these myelin sheets, leading to demyelination.” This disruption in communication between neurons explains why MS symptoms can vary so dramatically - the location of demyelination determines which functions are affected. "It could be the motor cortex, resulting in mobility issues, or the visual cortex, causing problems with vision," Dr. Tayeb noted. While the exact cause of MS remains unknown, researchers have identified several factors that may contribute to its development. According to our panel, MS is significantly more prevalent in women, who represent approximately 65% of MS patients - possibly due to women's more active immune systems making them more susceptible to autoimmune conditions like MS. Geographic distribution also offers clues, with higher rates in regions farther from the equator such as Canada, northern United States, and parts of Europe (with Denmark having a particularly high prevalence). This pattern has led scientists to investigate a potential link with vitamin D deficiency, though studies remain inconclusive. The Patient Experience: Hassan's Journey Few stories illustrate the unpredictable nature of MS better than that of Hassan Nada, entrepreneur, journalist, and self-described "MS warrior." Hassan's first symptom appeared in 2018 when he suddenly lost vision in his right eye while on holiday in Egypt. "I woke up one day, and out of nowhere, my vision was blurry to the point where I thought I was blind," Hassan recalled. Despite seeing an ophthalmologist, his condition went undiagnosed as MS. His vision eventually returned after treatment with corticosteroids. Four years later, after moving to Luxembourg, Hassan experienced sciatic nerve pain and numbness in his lower body. His general practitioner recognized the connection between his previous episode of optic neuritis and his current symptoms, immediately suspecting MS. "She screamed at me and had me go to the ER right away," Hassan shared. After extensive testing, including MRIs, blood tests, and a spinal fluid sample, the diagnosis was confirmed: Hassan had multiple sclerosis. The emotional impact of this diagnosis was profound. "My life changed from that moment onwards, and I went into complete depression," he admitted. But through the unwavering support of his wife and access to modern treatments, Hassan has found ways to adapt and advocate for others with MS. Treatment Approaches: Managing an Incurable Condition While MS currently has no cure, Dr. Tayeb emphasized that it is treatable. "Notwithstanding the fact that MS is incurable, it is treatable," he stated. "The problem is that every patient is different. The trajectory of the progression, diseases, symptoms are different.” Disease-modifying therapies (DMTs) aim to slow the progression of MS by suppressing or modulating the immune system. These treatments vary widely in their administration methods (pills, injections, infusions) and side effect profiles. Hassan's treatment journey illustrates the often challenging process of finding the right approach. After being diagnosed, he was unable to receive his doctor's first-choice treatment due to having a virus that made it dangerous for him. He then tried a pill-based DMT that, despite its high success rate with other patients, didn't work for him. Finally, he found success with a monthly subcutaneous injection called Kesimpta. "Last week I went to the neurologist office depressed," Hassan shared. "I was like, 'I know it didn't work.' She's like, 'No, it actually worked. There are no new lesions. You can now make long-term plans in life.’" Innovative Approaches: The Brain's Virtual Gym Dr. Tayeb and Samaher Garbaya, co-founders of MyelinZ, are taking a different approach to MS management. Their "virtual gym for the brain" uses neurotechnology to promote neuroplasticity - the brain's ability to form new neural connections. "We're trying to promote neuroplasticity in the brain," Dr. Tayeb explained. Their platform uses games to stimulate specific brain regions while measuring brain activity. Using machine learning, they analyze six different digital biomarkers to create personalized brain exercises. This approach draws inspiration from research showing that activities like playing musical instruments or singing can activate certain brain areas, potentially slowing disease progression by strengthening neural pathways. The Role of Support: Community and Family Multiple speakers emphasized that MS affects not just the individual but their entire support network. Anne Leurs, who manages the Multiple Sclerosis Society in Luxembourg, noted that MS typically appears between ages 20-40 - a critical period when people are building careers, starting families, and establishing their adult lives. "It's a very difficult period, this period of diagnosis," Anne observed. "It's a chronicle disease. This means that you will have to live your life on with this disease.” Hassan's experience underscores the crucial role of support systems. "MS either breaks a couple or it makes them the strongest couple in the world," he remarked. When first diagnosed, he told his wife she should leave. "She's like, 'It's because I love you that I'm not leaving, and we're going to make it out of this stronger than ever.'" Five years later, she remains his "backbone," managing his appointments and ensuring he takes his medications. For those without close family support, community organizations like the Multiple Sclerosis Society provide vital resources, information, and connection. Complementary Approaches: The Mind-Body Connection Mariette Lentz, a Luxembourgish soprano who specializes in the Alexander Technique, offered insights into complementary approaches that can help manage MS symptoms and improve quality of life. The Alexander Technique is "a mental technique" focused on "exploring the relationship between our thoughts and our movement," Mariette explained. While not a therapy or cure, it offers tools to help reduce stress and bring the nervous system to a calmer state - particularly valuable for MS patients who often experience anxiety related to their unpredictable symptoms. This, naturally, is a method that can help us all. The Daily Reality Hassan painted a vivid picture of what daily life with MS can entail: "Imagine waking up every day of your life with the worst hangover in the world without having to drink.” Despite this challenge, he maintains a positive outlook and has channeled his experience into advocacy work, connecting with MS communities around the world. "I'm disclosing some personal parts of my life in hopes that it's actually going to benefit people," he explained. Looking Forward: Hope in Research and Community While MS remains incurable, advances in treatment options continue to improve outcomes for patients. From traditional DMTs to innovative approaches like brain-computer interfaces and neuroplasticity training, the landscape of MS management is evolving rapidly. As our conversation demonstrated, the combination of cutting-edge medical science, dedicated healthcare professionals, strong personal support systems, and community resources creates a foundation for living well despite MS. For those navigating the complex journey of MS - whether as patients, family members, or healthcare providers - knowledge and community remain powerful tools. By continuing to share stories like Hassan's and insights from experts like Dr. Tayeb, Samaher Garbaya, Anne Leurs, and Mariette Lentz, we can work toward greater understanding and better support for everyone affected by this challenging condition. https://myelinz.com https://www.msweb.lu/wp/
