Living with neuromyelitis optica spectrum disorder (NMOSD) can be challenging. But the more you understand about the condition and the latest research and treatment options, the better off you’ll be. In this interview, Professor Luis Alfonso Zarco, a leading neurologist from Colombia who specializes in NMOSD, shares insights into the symptoms, treatments, and advances in care for this rare autoimmune disease. Whether you have just been diagnosed or have been living with NMOSD for years, this conversation will give you a deep dive into the fundamentals of NMOSD care, from early recognition to personalized treatment options. Learn why timely intervention is important, how NMOSD differs from multiple sclerosis, and what the future may hold for NMOSD patients.
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Nele von Horsten: Hello, Luis! It’s such a pleasure to have you on the show. Greetings to Colombia!
Prof. Luis Alfonso Zarco: Hi, Nele, it’s a big pleasure to be here with you discussing NMOSD. Thank you so much for inviting me. I’m ready to participate in your podcast.
Nele von Horsten: Fantastic! Before we dive into our discussion on NMOSD, could you introduce yourself so our listeners know who’s joining us today?
Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero?
Prof. Luis Alfonso Zarco: Certainly. I’m Luis Alfonso Zarco, born in Barranquilla on Colombia’s Caribbean coast. I studied medicine at Universidad del Norte in Barranquilla and later specialized in neurology at Pontificia Universidad Javeriana in Bogotá. I also trained as a neuroimmunologist at Universidad Autónoma de Barcelona, and I’m currently a candidate for a Master’s degree in Multiple Sclerosis from Dresden International University and a fellow of the European Charcot Foundation. Currently, I’m based in Bogotá, where I work at Hospital Universitario San Ignacio and serve as a neurology professor at Pontificia Universidad Javeriana. As director of the Neuroscience Department, I oversee cases of high complexity. I’m married to Angelica Rico, a nurse specializing in occupational health, and we have two children: Maria Paula, a lawyer, and Luis Carlos, studying finance. I’m passionate about my work, especially caring for patients with demyelinating diseases like NMOSD. This work is meaningful because these conditions affect people’s quality of life, their aspirations, and dreams, and we can play a key role in helping them achieve their goals.
Nele von Horsten: That’s wonderful! Congratulations on your lovely family.
Personal motivation for your career choice?
Prof. Luis Alfonso Zarco: My primary motivation is the opportunity to help people with neurological disabilities. These conditions affect relationships, work, and personal goals. Neurology offers ways to assist patients through treatments, psychological support, and rehabilitation. This impact on people and society is my driving force.
Understanding Neuromyelitis Optica Spectrum Disorder (NMOSD)
What is Neuromyelitis Optica Spectrum Disorder (NMOSD), and how does it differ Multiple Sclerosis?
Prof. Luis Alfonso Zarco: NMOSD is an autoimmune demyelinating disease, where specific autoantibodies target aquaporin-4, a protein found mainly in the central nervous system, especially in areas like the spinal cord, optic nerve, and brainstem. It’s an inflammatory disease characterized by attacks and relapses, each potentially leaving a residual deficit. While NMOSD and multiple sclerosis can affect similar areas, such as the spinal cord and optic nerve, the inflammatory mechanisms and clinical presentation differ. For instance, NMOSD optic neuritis causes significant vision loss, often requiring treatment with steroids and plasma exchange for recovery. In multiple sclerosis, optic neuritis usually results in mild vision loss that may spontaneously improve. NMOSD spinal cord involvement can lead to severe outcomes, such as paraplegia or quadriplegia. The main difference lies in the severity and attack-driven progression of NMOSD, while multiple sclerosis often shows gradual disability progression independent of relapses.
Nele von Horsten: Thank you for that overview.
What are the typical symptoms and onset patterns of NMOSD, and how do they manifest over time?
Prof. Luis Alfonso Zarco: NMOSD presents several phenotypes. The most common are longitudinally extensive transverse myelitis and optic neuritis, which can affect one or both eyes. Some patients experience a combination of these symptoms, while others may present with area postrema syndrome, characterized by hiccups, nausea, and vomiting. Less commonly, patients may show symptoms like narcolepsy due to encephalitis. NMOSD is marked by recurrent attacks, each with distinct symptoms.
How important is early diagnosis in managing NMOSD, and what are the key signs that lead to diagnosis?
Prof. Luis Alfonso Zarco: Early diagnosis is essential in preventing disability. About 25% of disability progression occurs with the first attack. By diagnosing early and initiating effective treatment, we can prevent further attacks and slow disability progression. Timely treatment is vital, as delays can significantly reduce recovery potential. For example, a month’s delay in relapse treatment can lower recovery odds by 70%.
NMOSD Disease Course and Prognosis
How does NMOSD typically progress over time if left untreated or inadequately treated?
Prof. Luis Alfonso Zarco: Without treatment, patients face a high risk of relapses—about 52% in the first two years. These relapses are the main cause of disability in NMOSD, making it essential to prevent them and treat all diagnosed patients promptly.
What is the usual prognosis for patients diagnosed with NMOSD? Does it vary depending on the type of treatment initiated?
Prof. Luis Alfonso Zarco: Treatment quality is critical. Previously, first-line treatments included immunosuppressants, which, though effective, come with various side effects. Now, monoclonal antibodies offer a balance of efficacy and safety, significantly reducing relapse rates. Some monoclonal antibodies decrease the risk of relapse by 70-90%, reshaping the disease’s progression.
Is there a particular demographic or group that tends to experience more severe outcomes from NMOSD?
Prof. Luis Alfonso Zarco: Yes, there are demographic differences. For example, patients of African descent have a higher likelihood of severe attacks and blindness, while Japanese patients tend to experience fewer relapses. Young patients face more frequent relapses, while older patients are more likely to have motor impairments. Women also have a higher risk of relapses than men.
How important is symptomatic treatment in NMOSD patients and are the special forms that are leading?
Prof. Luis Alfonso Zarco: Symptomatic treatment is crucial. NMOSD patients often experience pain, spasticity, neurogenic bladder issues, erectile dysfunction in men, and fatigue. Treatments like botulinum toxin for spasticity and neurocognitive therapies for fatigue significantly improve quality of life.
First-Line Treatment Options for NMOSD
What are the standard first-line treatments for NMOSD and what is their mechanism of action?
Prof. Luis Alfonso Zarco: Currently, I consider monoclonal antibodies as first-line treatments because of their effectiveness in reducing relapse rates. Satralizumab, for example, targets the interleukin-6 receptor, while eculizumab targets the C5 component of the complement system. Rituximab is sometimes used off-label in some regions. These antibodies decrease the risk of relapse by 70-90%, but where monoclonal antibodies are unavailable, traditional immunosuppressants can still be used.
Challenges and Accessibility in NMOSD Treatment
What are the main challenges in making monoclonal antibody treatments more accessible for NMOSD patients worldwide?
Prof. Luis Alfonso Zarco: Accessibility requires collaboration among health system leaders, pharmaceutical companies, scientific societies, and patient associations to highlight the importance of these treatments. Monoclonal antibodies offer effective control of NMOSD with a favorable cost-effectiveness ratio. Increasing access is crucial to reducing patient disability.
Future Directions in NMOSD Treatment
How important is continued research into personalized treatment plans for NMOSD based on genetic, clinical, or biomarker differences?
Prof. Luis Alfonso Zarco: It’s vital, as not all patients respond equally to treatments. For example, some Colombian patients with genetic variations don’t respond well to rituximab due to faster B cell repopulation. Personalized treatments, tailored to genetic and clinical profiles, improve outcomes, and we need biomarkers to guide these personalized approaches.
Quickfire Q&A Session
Complete the sentence: "For me, NMOSD is...."
Prof. Luis Alfonso Zarco: …an opportunity to help patients and support them in achieving their goals and dreams. It’s a way to make a meaningful difference in people’s lives.
What development would you like to see in the field of NMOSD in the next 5 years?
Prof. Luis Alfonso Zarco: I hope for advancements in CAR T cell therapies and immune-tolerance strategies, such as tolerogenic dendritic cells that stimulate anti-inflammatory responses.
Farewell
Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD?
Prof. Luis Alfonso Zarco: You’re not alone. Many professionals worldwide are dedicated to finding new treatments and improving your quality of life. Stay strong, and remember, support is always available.
How and where can interested people follow your research activities?
Prof. Luis Alfonso Zarco: You can follow me on Instagram at @dr_zarco.
Nele von Horsten: Thank you for sharing your insights on NMOSD, for your research, and for your dedication to patient care. Greetings to Colombia, and I hope to see you at a future ECTRIMS conference.
Prof. Luis Alfonso Zarco: Thank you, Nele. It’s been a pleasure.
See you soon and try to make the best out of your life,
Nele
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