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"I dream many nights that I go ice skating again, that I am on the beach and I dive headlong into the water, that I ride a bicycle. I suppose it is because I am terrified to think that I cannot attend to my daughter's needs. I cannot but I keep on running and my life is a non-stop of daily activity ". She is Esther Sevillano. A 41-year-old fighter, mother of a 9-year-old daughter and affected by multiple sclerosis .
His life began to change, "although not radically because my sclerosis is progressive and because of my age I think I was not very conscious", at 25, "just when I started working" with a diagnosis, in 2005, of multiple sclerosis; a process that began as "a strange sensation in the cervical and back" and through which he has learned not only the changes that have occurred in his body, but also what are resignations, loneliness, efforts and the limitations, but also the joys and successes, that there are. "I have had a morrocotuda luck; I have lifelong friends who do not make me feel bad, although they are aware of how far I can go. I have known how to adapt and I maintain myself because I do not stop ."
Esther, like more than 2.5 million people in the world - 55,000 in Spain of which 75% are women - affected by this neurodegenerative disease and without curative treatment, will celebrate today the World Day of Multiple Sclerosis 2020 in a way different from that of other years; that imposed by the current coronavirus pandemic.
A celebration that will take place from the current confinement and social distancing, something with which people with MS are very familiar, but with the same desire to "come out of the closet" , to reduce the stigma and social isolation they face. constantly, to ratify and make known that they can lead a full life. From their homes, and with the help of social networks, they will launch the #ConexionesEM Action through which society is invited to flood with messages, signs of affection, and support for patients. Everything is valid so that "no one has to face the disease alone," says Carmen Valls, manager of the Multiple Sclerosis Foundation Madrid (FEMM), the entity promoting this initiative.
"MS is the 'disease of a thousand faces' in which, to the various physical symptoms, the mood effects that end up stigmatizing those affected are added. 82%, in fact, suffer affectation in the social sphere and the majority does not achieve full labor integration despite being young adults. It is necessary that they obtain the certificate of disability to the diagnosis, something unrecognized, so that they can declare their disease and integrate with labor guarantees. We ask for humanization; that society and the different administrations open their eyes ", needs that Lucienne Costa-Frossardd, of the Neurology Service and coordinator of the Multiple Sclerosis Unit of the Ramón y Cajal Hospital, Madrid, shares and ratifies.
"70% of the more than 1,500 patients in our practice study, finish their careers, work, have children, travel. They lead a normal life, with the only exception that they are being treated for a chronic process. The disease must be visible , it is necessary to "remove multiple sclerosis from the closet", that those affected who are well say so. It is essential to reduce the socio-labor stigma. This must be changed. "
Machinery that does not stop
Since the State of Alarm was declared due to the coronavirus pandemic, people with MS have lived in greater isolation than usual -with uncertainty, concern, anguish and fear- this new and unknown health situation when considered, like other groups of sick, risk groups for Covid-19. However, from minute one of the collective confinement, a new gear started up. All the actors involved in its management joined forces and resources to protect the sick and their families and continue to provide medical assistance.
Celia Oreja-Guevara, head of the Neurology Section of the Hospital Clínico de Madrid, remembers how the consultation areas were closed to avoid the risk of contagion. But, in parallel, telephone consultations were opened for Neurology "whose calls increased up to five times in normal conditions. The patients were considered 'a priori' risk group. But, it is curious that they have not been so affected by Covid-19 as expected at the beginning. " In this sense, Costa-Frossardd indicates that of the 1,500 patients that his unit cares for, 40 have reported that they are positive, due to clinical suspicion or admission, for Covid. Only 6 have needed income, "although the majority have passed the disease at home and it has evolved very favorably."
The observation of this lower incidence in immunosuppressed patients could be related, according to neurologists, to the effect of immunomodulatory and immunosuppressive treatments followed by MS patients, a phenomenon that, at the beginning of the pandemic, seemed to work against it, as as in other groups with these characteristics. "Possibly, the medication is playing some role. It is known that in Covid there is a second stage, very inflammatory, characterized by the 'cytokine storm'. The hypothesis is that these drugs could be interfering with the inflammatory process, although it is very It is complex to specify pathophysiological responses to a virus that was unknown for three months. We are again doing empiricism, so trials have already begun to try to clarify this aspect. "
The transfer of hospital consultations to a 'clean ambulatory', with older neurologists at the forefront to avoid infections also among professionals, was the next step with which MS patients have been kept safe. " The objective was that they did not come to the hospital . Imaging tests were not done in the outpatient clinic , but information and assistance have been kept constant. In general, they have not abandoned their treatments, a process that, according to Oreja-Guevara, and at least in the Clinical Hospital, it has been facilitated by the Hospital Pharmacy "sending the medication to their homes by courier and making teleconferences between professionals and patients. The only thing that really stopped was the rehabilitation , whose rooms were also destined to assist those infected with SARS-CoV-2. But, this therapy has been carried out through videoconferences with professionals from patient associations, who have been an invaluable help ".
The associations have been and continue to be a gateway between neurologists and patients, sending emails and making phone calls with infinite doubts from those affected. But, they have also managed to stop their lives completely. For example, 500 patients usually attend the FEMM for rehabilitation - physiotherapy and occupational therapy. In times of confinement, Covid has attended 480 online, "with individualized rehabilitation sessions," says its manager, who reflects that from a tragedy like the one we are currently experiencing, some positive aspect can be extracted: "The formation Telematics has opened our eyes to try to pass a pending subject: getting to where we were not going with patients who were isolated at home and could not attend rehabilitation, for example. Now, new opportunities open up. " Esther Sevillano, is categorical and clear: the association "has saved her life during this confinement because I have been able to maintain an exercise routine. Lying down on the bartola is not an option, neither for me nor for the rest of the patients; it is torture .
Multiple sclerosis is a very heterogeneous disease in terms of forms, symptoms and age of presentation, although the average diagnosis is around 30 years. While in younger patients, the initial spearhead is usually an injury to the optic nerve - optic neuritis - in others, sustained sensory disturbances - tingling in the hands or legs - are usually the first alarm signal.
Basically, the established forms are recurrent remitting multiple sclerosis, progressive primary, and progressive secondary. All have treatments, such as injectable or oral immunomodulators and immunosuppressants and intravenous monoclonal antibodies and other oral drugs, strategies that gradually overlap depending on whether the active phases of the disease, which are manifested with outbreaks, are controlled or not. . "The current therapeutic arsenal is allowing good global control. Safety is highly acceptable in each of the drug groups, with efficacy rates ranging from 60 to 80%, depending on the form and line of administration, in terms of to reduction of outbreaks.
Fortunately, it is a pharmacological field in continuous research and innovation that, little by little, increases the control of the disease, "explains Oreja-Guevara. However, the neurologist insists that the final therapeutic objective would be to fix and avoid damage by remyelinating substances -neuroreparators or neurorestores- and neuroprotectors that repair or protect nerve injuries.
"Right now, there is only one phase II trial with two remyelinizers. The idea would be to combine existing drugs with new strategies."
Costa-Frossardd shares this hope, but stresses that, although "current treatments have achieved high levels of efficacy", with patients completely free of outbreaks and inflammatory lesions for periods of time, even indefinite, it is no less true that "in the progressive forms, for example, we lack efficacy to stop the progression and to contain the own atrophy of the MS". And he also warns that there is a long way to go in symptomatic treatments -for 20 years there have only been two specific drugs-, for "the famous invisible symptoms such as cognitive deterioration, spasticity, pain that accompanies the disease, problems of Sphincter control or sexual disorders, symptoms that really worry the patient because they affect and limit their day to day. "
New open fronts
The challenges do not end with the advances provided by the development of more effective medications. At this time, professionals face management in which they must take into account the peculiarities and needs of three subgroups of patients in whom an unexpected exponential increase in the disease has been observed in the last 10 years: children, the elderly and pregnant s. "It is a very different situation to which we are accustomed, but increasingly frequent," says Costa-Frossardd, who points out that the justification for this increase could be due to earlier and more accurate diagnoses, although he does not rule out that "there is something that we are doing badly in society and that is really predisposing to the increase in patients with multiple sclerosis in all groups. In Spain there are 1,800 new cases of multiple sclerosis a year, which means that every 5 hours a new case is diagnosed . "
Although there are few children in whom the disease debuts before the age of 10 - it usually does not exceed 2% of all cases -, it is true that between 6 and 18 years of age, the figure is around 6%, a phenomenon that has become especially evident in the last year.
In the elderly, the situation is reproduced. Despite the fact that the appearance of multiple sclerosis is infrequent above the age of 65, currently new diagnoses are around 10% and are usually "very late and complex because before one thinks of other types of pathologies more typical of the age It is also a population especially sensitive to the secondary effects of the medication, both for presenting other pathologies and for the aging of the immune system itself, which exposes them to greater secondary effects -which in young people are not so appreciable- or to opportunistic infections "
Protagonists of his life
Giving voice to the more than 50,000 people who suffer from multiple sclerosis in Spain is the goal of #ProtagonistasEM, a digital campaign with which, in a different, but equally close way, the pharmaceutical company Roche, aims to bring the reality of all of them to the society. More than ever, they must be the protagonists, in a moment as special as the one we are experiencing with the COVID-19 pandemic.
The EM connection is, therefore, of particular importance not only for those affected by multiple sclerosis but for the entire society to be aware of what daily life is like for those affected. In this way, the campaign aims to clarify, answer questions, demystify and de-stigmatize an autoimmune, chronic and degenerative disease that affects, above all, young people, and whose cause is still unknown, but which is the second cause of disability in young people, after traffic accidents, and which affects 75% of women.
The variable symptoms and its different forms of presentation make multiple sclerosis the 'disease of a thousand faces', so it remains a great unknown to society. But, an early diagnosis together with an effective treatment offers a higher quality of life and less progression of the disease, aspects that the #ProtagonistasEM initiative emphasizes and from which those affected are encouraged to tell their experiences to be the true protagonists of sclerosis. multiple.
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