Today I would like to introduce you to Dr. Sanja V. Gluscevic, a renowned neurologist who specializes in multiple sclerosis (MS) as well as other inflammatory diseases of the central nervous system and epilepsy. Hailing from Podgorica, the capital of Montenegro, Dr. Gluscevic has built her impressive career with dedication and passion to improve the lives of patients with neurological disorders.
With extensive training and experience in leading medical centers, as well as her active involvement in international organizations and her own NGO, Dr. Gluscevic is not only an expert in her field, but also a passionate advocate for the education and support of patients with MS, NMOSD and MOGAD worldwide. Learn more about her personal motivation, her professional achievements and her efforts to raise awareness of brain diseases in Montenegro.
Be inspired by her story, her knowledge and her tireless dedication to making a difference in the lives of people with MS.
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Table of Contents
Introduction – Who is Dr. Sanja V. Gluscevic?
Hello Nele. Thank you very much for your kind invitation to participate in your esteemed podcast today.
I am a neurologist specializing in MS, other inflammatory disorders of central nervous system and epilepsy. I come from Podgorica, the capital of Montenegro, a small and picturesque country in the Balkans, with approximately 620.000 inhabitants. I have completed my residency and fellowship training in epilepsy and clinical neurophysiology at the University of Belgrade, Medical School. During my tenure there, I had the privilege of learning from eminent figures in the realms of multiple sclerosis and epilepsy including professor Jelena Drulović, professor Šarlota Mesaroš, professor Dragoslav Sokić and professor Aleksandar J. Ristić. Currently I am engaged in the pursuit of my master’s degree in MS at the European Charcot Foundation (where I also serve as vice- chair of ECF young investigator/fellow) and PhD thesis in epilepsy at the University of Montenegro. I have also recently been appointed as a first Montenegrin ambassador of neurology and brain health by European academy of neurology (EAN). I am also honored to serve as the ambassador for The Sumaira Foundation, which, in my view, stands as the premier organization worldwide for NMOSD and MOGAD. The palpable engagement, energy, affection, and unwavering support within this vast and diverse community make it the epitome of a unified and inclusive family dedicated to these rare conditions.
Beyond my personal endeavors, I take immense pride in fulfilling roles as a mother, a spouse, and a devoted owner of Russian wolfhound. My passion for exploring diverse cultures through travel is unwavering, and I find solace and inspiration in tranquil nature walks accompanied by classical and rock music, depending on a mood, while delving into the depths of literature exploring the intricacies of human behavior from psychological and neuroscientific perspective.
Personal motivation for your career choice?
The driving force behind my career choice stems from a deeply personal place. Becoming a neurologist has been a lifelong dream, one that traces back to a poignant moment captured on an old cassette tape from my fifth birthday. In that recording, my mother’s voice tenderly asks me, „What do you want to be when you grow up?“ Without hesitation, my young self confidently declares, „I want to be a doctor.“
What makes this aspiration all the more remarkable is the fact that no one in my family has pursued a medical career; rather, they excel in law, sociology, psychology, and similar domains. From the earliest moments of my recollection, I harbored a profound desire to aid the ailing, the vulnerable, and even our animal companions. This fervor accompanied me throughout my primary and secondary education, where I gravitated towards the sciences and excelled in biology competitions, clinching first place multiple times and earning national accolades.
The allure of neurology truly captured my imagination upon completing anatomy classes during my academic journey. The intricate dance of those remarkable gray matter cells, their communication networks, and astonishing functionalities left me spellbound. It was from that moment onwards that my fascination with the field burgeoned, eventually leading me to where I stand today—a dedicated and empathetic neurologist, driven by an unyielding passion to make a difference in the lives of others.
Prevalence and Awareness of MS, NMOSD and MOGAD in Montenegro
What is the prevalence of MS, NMOSD and MOGAD in Montenegro and how many people receive a new diagnosis each year?
The latest census in Montenegro reveals a population of 617,213 individuals. Montenegro lacks a national multiple sclerosis (MS) registry, relying instead on data from the Institute of Public Health and a registry based in the main referral hospital. Within the country, my workplace serves as the sole tertiary center and referral facility for MS patients nationwide. It is within our clinic that final decisions regarding Disease-Modifying Therapy (DMT) treatments are determined for each patient.
Data from the Institute of Public Health indicate a total of 877 MS patients, whereas our internal registry accounts for 107 fewer patients. This disparity may be attributed to immobile patients receiving in-home care, leading relatives to seek consultations on their behalf, as well as individuals either not availing themselves of DMT treatment or regrettably declining it. With these figures in mind, the prevalence of MS in Montenegro stands at 142 per 100,000 individuals. An evident and consistent rise in prevalence is observed, fueled primarily by enhanced diagnostic practices and increased longevity among MS patients.
While gender ratios remain steady, with a female-to-male ratio of 2:1, the majority of diagnoses occur in patients in their 20s and early 30s. Notably, a growing trend of older individuals receiving diagnoses in their 50s or 60s has emerged, as a globally recognized phenomenon. Annually, between 40 to 70 new MS cases are diagnosed, resulting in an incidence rate ranging from 6.4 to 11.3 per 100,000 individuals.
Regarding Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody Disorder (MOGAD), NMOSD presents a prevalence of 1.2 per 100,000 and an annual incidence of 1 per 620,000. Conversely, MOGAD carries a prevalence rate of 0.3 per 100,000. Presently, an ongoing study focusing on NMOSD and MOGAD patients in Montenegro aims to provide more precise data by the first half of the upcoming year.
How aware is the general population of multiple sclerosis, NMOSD and MOGAD in Montenegro?
The level of awareness surrounding MS within the general populace exhibits a significant variance. Despite escalated efforts in MS awareness campaigns in recent years, the extent of awareness remains inadequate compared to more prevalent health conditions such as hypertension or diabetes. In the capital and urban locales, there exists a relatively higher level of awareness due to the dissemination of information through diverse channels like television, social media and healthcare services. Conversely, in rural or underdeveloped regions, awareness levels are notably low owing to constrained healthcare resources and scant awareness initiatives. This disparity poses challenges in accessing accurate, scientifically validated information.
Enhancing collaboration among healthcare professionals, advocacy groups, and community educational programs concerning MS is imperative for addressing this knowledge gap among the general populace. Presently, neurologists are called upon by the MS Association of Montenegro, a non-governmental organization (NGO) and its affiliates, solely on World MS Day to deliver lectures to patients and their families regarding MS, its symptoms, diagnosis, and management, rather than reaching out to the broader community. Neurologists have a sparce television appearances as well. I perceive this approach as woefully inadequate, as physicians play a pivotal role not only in treatment but also in fostering education, as knowledge undeniably empowers individuals. Furthermore, we, as neurologists, bear the crucial responsibility of advocating brain health and preventive strategies.
Recognizing the insufficiencies within the current paradigm, I have proactively initiated the establishment of my own NGO (Montenegrin association for brain diseases – HOPE) to help bridge existing gaps. This organization aims to serve as a conduit between healthcare professionals and patients, translating complex scientific jargon into layperson terms. By fostering communication and understanding, we endeavor to untangle misconceptions and dispel myths, fostering enhanced satisfaction among patients and healthcare providers alike. Together, united in our efforts, we are stronger, for sharing knowledge paves the path to enlightenment.
Within the realm of NMOSD and MOGAD, there exists a concerning lack of general awareness, as these conditions receive limited discourse even within neurology circles. For many individuals, this disorder remains largely unknown. Through my role as The Sumaira Foundation ambassador (TSF), I have successfully connected with NMOSD and MOGAD patients in Montenegro, directing them to a comprehensive website housing invaluable, scientifically accurate information alongside numerous testimonials, thoughtfully translated into our native language. This outreach has proven transformative, as a substantial number of patients and their families face challenges in accessing reliable information, often due to language barriers that impede their comprehension. With the establishment of my NGO, I am optimistic about reaching a wider audience through TSF website, recognizing that sharing knowledge is the cornerstone of awareness and that true power lies in fostering understanding through education.
Quality of Life for MS, NMOSD and MOGAD Patients in Montenegro
What are some of the challenges faced by MS, NMOSD and MOGAD patients in Montenegro regarding access to healthcare and support services?
In Montenegro, the healthcare insurance coverage is extensive, ensuring all patients have access to almost all treatment used for MS in the world. This places our patients in a truly advantageous position, especially when compared to neighboring countries where such access may be limited. As mentioned previously, one of patients main challenges pertains to medication procurement, making it potentially cumbersome for patients from distant cities to attend treatment monitoring sessions and potential therapy adjustments, but they are aware of the importance which makes it easier to cope. Patients typically undergo routine check-ups locally and visit our center only for necessary consultations and more comprehensive care. An exception is made for patients from the capital city since our facility serves as the sole provider, irrespective of its tertiary level status. Regarding NMOSD, our access is limited to satralizumab, as other FDA- and EMA-approved treatment options are not currently available. In the treatment of MOGAD patients we use off -label medication such as azathioprine, mycophenolate, and Rituximab. As a healthcare provider, the leading challenge I encounter for patients with MOGAD is the absence of cell-based assays in my country for accurate diagnosis. The process for obtaining medication mirrors that of MS patients, with regular check-ups conducted at our hospital.
During my outpatient consultations, patients frequently express challenges in accessing physical therapists, psychologists, and ophthalmologists due to their demanding schedules, highlighting an unmet need in this area. Thanks to the NGO Montenegrin MS Association, the government provides specialized rehabilitation sessions for a duration of three weeks annually at the government’s expense, a service which patients find immensely beneficial.
Which cultural stigmas or misconceptions exists surrounding MS, NMOSD and MOGAD in Montenegro and how do they affect the treatment and management of MS in Montenegro?
Neurological disorders, including Multiple Sclerosis (MS), in Montenegro, as in the global context, are unfortunately intertwined with stigmas and misconceptions. A notable lack of understanding about MS prevails among many individuals in my country, fostering various misbeliefs. Common misconceptions persist, such as the belief that MS is contagious and can be transmitted via blood and that MS ultimately leads to severe disability. This misconception is particularly prominent among older individuals with MS and those with a longer disease duration, while younger people tend to hold more informed perspectives.
As a female healthcare provider, I am particularly passionate about issues concerning pregnancy and sexual health among women with MS. Regrettably, some women perceive MS as a hindrance to pregnancy, resulting in diminished commitments to relationships and marriage.
Upon MS diagnosis, people with MS face job insecurity or even dismissal, encountering rejection and being allocated to different work environments that evoke feelings of inadequacy and frustration. These experiences can drive social isolation, income loss, and disrupt family dynamics, having huge on their overall quality of life.
Cultural beliefs, especially entrenched in certain Montenegrin regions, may lead some individuals to prioritize alternative therapies over conventional medical treatments. In certain cases, individuals may combine alternative and traditional treatments without disclosing this information to their healthcare provider, potentially eliciting unforeseen interactions or exacerbating their condition. Moreover, there exists a misconception surrounding the efficacy of available MS treatments, as individuals often engage in discussions based on personal anecdotes, inaccurately presenting them as scientific truths. This could result in poor adherence to medically recommended therapies.
NMOSD and MOGAD remain relatively unrecognized conditions among patients in Montenegro. Given their severe clinical manifestations, particularly associated with severe optic neuritis and/or transverse myelitis, patients typically adhere diligently to prescribed medications and actively seek further insights about their condition through dialogue with healthcare providers. However, this proactive approach does not preclude individuals from exploring online resources, such as blogs and the internet, to access information about their condition, which may inadvertently expose them to inaccuracies. Navigating through the vast digital landscape and discerning accurate information amidst the plethora available poses a considerable challenge in the modern era.
Access to Treatment and Support Services for MS, NMOSD and MOGAD Patients
What types of treatments, therapies, or interventions are more commonly recommended or accessible in Montenegro (e.g., certain types of DMTs, aHSCT, rehab)?
As previously mentioned, healthcare insurance in Montenegro is comprehensive, treatments are covered by the the government. Individuals with MS typically do not encounter barriers to accessing treatments. Corticosteroid therapy and plasma exchange are typically utilized for relapse management. DMTs encompass injectables, oral medications, and monoclonal antibodies. These therapies are administered according to health regulations in Montenegro, albeit warranting adjustments based on current knowledge.
First-line treatments include interferons, glatiramer acetate, teriflunomide, and dimethyl fumarate. Second-line treatments comprise fingolimod, siponimod, cladribine, natalizumab, and alemtuzumab. Third-line treatments encompass alemtuzumab and cladribine. Autologous hematopoietic stem cell transplantation (AHSCT) is not available in Montenegro.
Rehabilitation plays a crucial role in maintaining health in MS patients. While most individuals attend rehab once a year, a minority engage in the prescribed exercises throughout the year. Many require assistance in physical training, and due to limited accessibility and busy schedules, they may not engage in sufficient physical activity as recommended by neurologists. Specialised physical treatment in a dedicated rehabilitation center primarily focuses on physical therapy, albeit lacking the utilization of robotics and other novel neurorehabilitation modalities
I firmly believe that this highly specialized approach should be further promoted, and it is essential for the government to support this initiative as it holds the potential to significantly enhance the quality of life of affected individuals.
Are there any specific laws or regulations in Montenegro that protect the rights and promote the well-being of individuals living with MS?
The healthcare system offers individuals with MS the chance to access specialized inpatient habilitation services for 21 days annually, each year. Through the Montenegrin MS Association, patients receive reduced fares for all forms of public transportation and are exempt from paying VAT during the importation of vehicles for disabled individuals. Additionally, various municipalities provide discounts on utilities such as water and electricity bills. Apart from rehabilitation for patients with NMOSD and MOGAD featuring transverse myelitis, no additional special laws or regulations are applicable to these patients.
Social Support and Coping Mechanisms
How do patients in Montenegro cope with the challenges of living with the condition?
Patient associations related to MS are instrumental in providing essential social support and legal guidance to patients in need. These associations in Montenegro are typically led by individuals with personal experience of the condition or volunteers, although neurologists are often willing to contribute to their efforts. Recently, psychologists have also been invited to participate in these initiatives. Through organizing events and activities, these associations foster a sense of community and provide invaluable emotional support. I strongly believe that more can and should be undertaken in this realm, and I am optimistic that my NGO will contribute significantly. Enhancing academic support, implementing preventive strategies, increasing patient involvement in research, facilitating open discussions, promoting family engagement, and expanding emotional support programs are among the many aspects I aim to address. These are no specific patient associations dedicated to NMOSD and MOGAD in Montenegro. Therefore, the opportunity to access the TSF website (https://www.sumairafoundation.org/) is vital for educating these individuals and fostering a sense of belonging to a global community and support network.
I consider testimonials to be particularly significant. Unfortunately, in Montenegro, patients are hesitant to share their stories, often requesting to keep their identities anonymous. This stands in stark contrast to the culture in many European countries and the USA. It saddens me to witness this reality, and I can only imagine the inner struggles these individuals endure. Your podcast and the incredible work you have consistently undertaken are truly inspiring. I personally believe that you have made a substantial positive impact on your community, and they are undoubtedly grateful to have you.
What roles do social support networks and community resources play in supporting MS, NMOSD and MOGAD patients in Montenegro?
The existence of a robust support network and patient association activities plays a pivotal role in enhancing public awareness and understanding. These platforms offer opportunities for individuals to share their experiences, receive advice, and garner encouragement, reducing feelings of isolation. By leveraging these resources and networks, patients MS can better manage their condition and uphold a higher quality of life. Furthermore, greater involvement of neurologists is crucial, and this is likely to unfold in the near future. Personal experiences can occasionally lead to misconceptions and frustrations. Efforts to heighten public awareness about MS aim to combat stigma and dispel misconceptions. Educating the public on the nature and impact of MS cultivates a more supportive environment for those affected by the condition. The global trend of diminishing empathy is concerning, and it is imperative to actively promote empathy and support.
Genuine support for patients with NMOSD and MOGAD currently stems from international organization such as the TSF, offering abundant resources and unconditional support.
The Sumaira Foundation
How did you become an ambassador for the Sumaira Foundation and what has changed as a result?
It is a privilege for me to share my experiences as an ambassador for the TSF. Through the introduction by my esteemed friend and brilliant colleague, Sara Samadzadeh, I had the pleasure of meeting Sumaira, the Executive Director of The Sumaira Foundation and a patient with NMOSD. Sumaira’s remarkable journey and unwavering commitment to raising global awareness about NMOSD, MOGAD, and other rare neuroimmune conditions are not only awe-inspiring but also serve as a wellspring of motivation for me and all those whose lives she has impacted.
Being a part of Sumaira’s foundation has underscored the belief that with intrinsic passion, courage, and a determination to break down barriers, one can make a profound and positive impact on the lives of those in need. Despite the scarcity of patients with NMOSD and MOGAD in Montenegro, individuals with rare or orphan diseases often find themselves in a realm of uncertainty, fear, and doubt. The opportunity presented by TSF has enabled me to channel my efforts towards bringing about positive change in the lives of these patients. Numerous ideas are currently taking shape in my mind, and with the continued support of TSF, I am optimistic that in the near future, all NMOSD and MOGAD patients in Montenegro will benefit immensely from our endeavors.
Are you involved in any research related to NMOSD and MOGAD and what is the main goal?
Last year, The Sumaira Foundation received 47 applications from 18 countries. Following a comprehensive review process, my project titled „NMOSD and MOGAD in Montenegro: Clinical Aspects, Pain, and Community Impact“ was one of the 7 projects chosen to receive a TSF SPARK grant. I am truly honored to be a grant recipient, and the ongoing support from TSF through these grants not only complements but also advances the Foundation’s evolving mission, with a focus on extending aid and resources to patient communities beyond the United States.
This study represents a pioneering effort in my country and promises to offer invaluable insights into the clinical aspects of these orphan diseases. By addressing current knowledge gaps and alleviating invisible symptoms, the research aims to enhance the quality of life, foster community engagement, and shed light on the challenges faced by individuals with NMOSD and MOGAD in Montenegro. I am confident that this opportunity given by the TSF will be greatly valued by those affected by these conditions, providing them with a reliable resource and supportive global community.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
MS plays a dual role in my life. Professionally, it stands as my most profound teacher, a relentless source of daily learning and insight that fuels an unending quest for enhanced treatment options and a fervent dedication to advocacy. Looking ahead, I firmly believe that our conversations will evolve from treatment strategies to include preventive measures. This optimistic outlook drives my commitment to advancing our comprehension and management of MS, with the ultimate aim of positively impacting the lives of those grappling with this condition.
Personally, as the spouse of someone living with MS, it serves as a poignant reminder of the transformative power of compassion, love, and encouragement amidst adversity.
Enigmatic nature of NMOSD and MOGAD sparks fascination, introducing numerous layers to explore and navigate along the way. From a quite pessimistic prognosis just over a decade ago to a disorder that can be more efficiency managed, this optimistic shift fuels my belief in brighter future and serves as a driving force for my ongoing dedication to research and advocacy in this field.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
In recent years, the inadequacy of a one-size-fits-all approach to research has become increasingly apparent. I am among those neurologists who believe that discussing the prevention of MS is a possibility, but I think it remains unattainable in the near future.
As a proponent of personalized medicine, I envision a future where we not only discuss the customization MS treatment but also contemplate the individualized care of patients with NMOSD and MOGAD as well. I advocate for the implementation of predictive models tailored to each patient’s unique characteristics, such as their genetic traits, biomarker profile, disease severity and presence of environmental risk actors.
This shift towards personalized care will enhance disease management, addressing both visible and hidden symptoms.
While this approach has gained traction in several countries, I strongly believe that the integration of patient feedback into the clinical trials will become more pronounced in the coming years. Patients‘ perspectives and experiences, long unfairly overlooked, are imperative for shaping research priorities and outcomes that ultimately enhance the quality of life for those affected by these conditions.
Regrettably, there are regions where effective and established treatments remain inaccessible. Therefore, ensuring equal and accessible healthcare must be a top priority.
Farewell
Finally, what message of hope or encouragement would you like to share with the listeners?
Never surrender! Hold onto hope! You are not navigating this journey alone. Your resilience and personal stories serve as the cornerstone of our advancement, inspiring us to intensify our research efforts. A vast global network of researchers, clinicians, and healthcare professionals stands behind you!
The past decade has witnessed remarkable breakthroughs that have transformed treatment approaches, heralding a brighter future. Our collective aspiration is that one day, discussions will center not only on finding a better cure but on preventing these conditions altogether. Let us forge ahead with unwavering determination and shared purpose.
How and where can interested people follow your research activities?
Interested individuals can follow my research activities through my publications on academic platform (Researchgate), or on professional social media (LinkedIn).
Thanks to Sanja for the insights and the great commitment to your patients.
See you soon and try to make the best out of your life,
Nele
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