These were the main conclusions of the forum that The newspaper of Aragon organized this Wednesday at the Auditorium of the University of Zaragoza Novartis, a reference laboratory in the design of innovative treatments for this and other diseases. The main actors in the community that are related to this pathology, medical experts and patient associations.
They all remembered that multiple sclerosis is a neurodegenerative disease appearing at an early age, between 20 and 40 years. Currently, some 55.000 people in Spain live with this disease, 75% women. It is also the second cause of disability in young people, behind traffic accidents, hence the importance of talking about this pathology and advancing its prevention and treatment.
El forum Multiple Sclerosis: comprehensive and personalized approach It's the first date of cycle of forums on health Advancing for your health, promoted by the Prensa Ibérica publishing group. The event was attended by the Minister of Health of the Government of Aragon, Sira Repollés, as well as the head of Public Relations at Novartis, Calvente Nativity, and the director of El Periódico de Aragón, Nicolas Espada, who highlighted the role of the media in disseminating and bringing society closer clear and rigorous information on health-related topics.
Disease “for life”
Repollés stated that multiple sclerosis is a “lifelong disease, which can seriously impact the autonomy of patients, and some end up being dependent people".
According to the counselor, the advances of recent times have made “increasingly specialized treatments” possible, which, together with early detection, “affects the disease progression” and makes the Life expectancy of people with multiple sclerosis “the same” as that of the rest of the population.
Repollés stated that Aragon has a working group to share diagnostic and therapeutic advances and that these reach all patients.” Specifically, in Zaragoza there is a unit specialized in multiple sclerosis (CSUR) at the Miguel Servet hospital, which is one of the 12 reference services for the treatment of this pathology in Spain.
Higher prevalence in the North
In fact, two of the greatest Aragonese experts in multiple sclerosis, including the CSUR coordinator, spoke to talk about advances in knowledge and treatments for the disease. Cristina Iniguez, neurologist, head of the Neurology Service of the University Clinical Hospital of Zaragoza and vice president of the Spanish Society of Neurology, defined multiple sclerosis as a demyelinating disease and compared the nerves of the brain to the cables of light. “The covering of these nerves is myelin, which is what is lost in this disease,” she said.
Furthermore, he pointed out that it is a disease typical of the Caucasian race and The areas of the world with the highest prevalence are the United States, Canada and the countries of northern Europe. Spain It is located in a middle zone, with a prevalence of 120 cases per 100.000 inhabitants.
Besides, the incidence in women has increased in the last 50 years, and we don't know why," commented the specialist, who acknowledged that "we still don't know why it occurs and what are the mechanisms that trigger the disease.”
Genetic and environmental factors
According to the doctor, the onset of the disease includes genetic factors – “15% of patients have an affected family member” – but also environmental factors, such as lack of vitamin D, obesity or smoking. One of the risk factors associated with multiple sclerosis is having suffered mononucleosis, an infectious disease caused by Eipster-Barr virus.
The symptom of sclerosis vary depending on the patient and stage of the disease, hence it is called disease of a thousand faces. Normally they are the same ones that affect a neurological disease: problems with vision, mobility, balance or sensitivity in certain parts of the body.
“Invisible” symptoms
Furthermore, according to the neurologist, there are other “invisible symptoms which are increasingly being given greater importance, such as Fatigue or cognitive and psychiatric disorders".
In any case, “no two patients are the same,” which requires multidisciplinary teams to treat the consequences and losses that appear in the more advanced stages of the disease, when initial drug treatments lose their effectiveness. “The future goes through a personalized medicine in which each patient must have their own treatment,” he concluded.
Diagnosis and treatment
Next, the neurologist and coordinator of the unit specialized in Multiple Sclerosis (CSUR) at the Miguel Servet Hospital in Zaragoza, Jesús Martín, spoke to the attendees about the treatment of this pathology, the diagnosis of which generates many uncertainties and questions in patients.
Dr. Martín made reference to the “landscapes of multiple sclerosis” for which “each person follows a different path” although with similar problems. According to him, with the passage of time the symptoms of the disease increase and other symptoms also appear. associated diseases how can they be depression, anxiety, inflammatory bowel pathologies or thyroid problems.
One of the objectives of the treatments is to delay these effects by taking advantage of the “windows of opportunity and reduce symptoms as much as possible, depending on their severity.
Early detection
The neurologist also highlighted the importance of a early treatment, as well as a early detection. “As doctors, we have to learn to listen, understand better and act,” said Jesús Martín. In addition, he emphasized the importance of the “more holistic” part of the disease, which has to do with “hygiene, exercise and the patient empowerment in their care process.”
Multiple sclerosis must be understood as a chronic disease and as such, it falls within the catalog of neurological diseases, which require a integrated care model that addresses prevention, health and social care, care for caregivers and health coordination.
“To achieve this shared model, it is very important that there be coordination between different health professionals and different medical specialties“said Dr. Martín. In this sense, he indicated that “there is a lack of information and communication and it is necessary to promote a culture of teamwork,” although steps are being taken to learn more about the patient and the disease process.. “It is necessary to listen and learn,” the specialist stated.
Colloquium of patients and professionals
Precisely the voice of the patients could be heard in the colloquium that took place afterwards, in which the two experts and Teresa Ferraz, director of the Aragonese Multiple Sclerosis Foundation (Fadema), José María Abad, general director of Health Care of the Government of Aragon, and Maria Bestue, medical director of the Miguel Servet Hospital in Zaragoza and coordinator of the healthcare quality group of the Spanish Society of Neurology.
Abad spoke about the situation of patients with multiple sclerosis as a “challenge for the health system” in which a change of focus is necessary to what is known as “liquid medical centers, more open to society, who work with social and community services and patient associations to offer a accompaniment that guarantees “a full life.”
María Bestué explained that the challenge for Hospital centers is “that patient-centered care it really is”, and for this it is important that that multidisciplinary care be also "accessible", so that the patient can carry out as many procedures as possible when they come to the consultation.
Differences in the disease
From Fadema, its director stated that the main challenge for patients is normalize your situation, “which is not little.” Ferraz recalled that today we have many drugs to stop the disease that did not exist years ago. This has created differences between patients older people, with “many more needs,” and the youngest newly diagnosed.
For the latter, “the most important challenge is finding work, saying that they have a chronic and degenerative disease,” he said. To overcome this, patient associations are requesting “a change in scale” to recognize multiple sclerosis as a degree of disability of 33% and to be able to have that “social support in the job search.”
About stigmatization of the disease, Ferraz said that he associates himself with a wheelchair when “it is not always like that,” although it is a “impoverishment factor, both for patients and for family members who see their income reduced due to not being able to work or having to take care of their family members," he explained.
Dr. Jesús Martín took the opportunity to demand a approach of the disease with gender perspective, since many patients are women who want to be mothers due to their age and sometimes that “delays or modulates treatments.”
Challenges for the future
For his part, José María Abad stressed the need to improve the training and coordination of professionals and added that “we have to continue researching new treatments.” In this sense, it is encouraging Eipster-Barr virus vaccine, which is already being developed and is in the testing phase.
Dr. Jesús Martín was skeptical about the possibilities of prevention and cure of this vaccine, because little is known about the origin and causes of the disease. “95% of the population has contact with this virus and does not develop multiple sclerosis,” he recalled.
According to the coordinator of the CSUR of Aragón, “there would even be the possibility that What we call multiple sclerosis are actually different diseases.", and asserted that "a cure is a wish but the disease is a reality that we must treat now."
Improved support
The director of Fadema spoke of a “hopeful future” on a therapeutic level in which having multiple sclerosis does not mean disability. Ferraz assured that the quality of life of patients has increased and has taken a radical turn in recent years.
An indicator, according to María Bestué, is that today there are very few outbreak hospitalizations. “Technology also facilitates the accessibility of healthcare patients and the nursing role It is essential for patient information and training, and all this can be improved,” said the Servet medical director.
Other challenges for improving care would be to incorporate shared medical history in health centers, promote access to services for patients in rural areas, work in a decentralized drug distribution system, and include the maintenance rehabilitative care in the public health system, something that is not available in all autonomous communities and constitutes one of the main demands of patient associations.
