Paris hosts the most critical world congress on the disease, in which progress has been made so much that it seems that everything is done. And not.
In 1868, the French neurologist Jean-Martin Charcot delivered a lecture at the Hospital de la Salpêtriere that would go down in the annals of the history of medicine. For the first time, he described a disease that would become a real challenge for those affected - in the first place -, their caregivers and all the doctors and researchers dedicated to their study: multiple sclerosis. Everything happened in Paris, and it is in this city that these days the world’s largest medical congress on pathology is celebrated, as it joins the annual conferences of the two medical societies most involved in their research: the American and the European.
Although the ailment continues to be the most frequent cause of neurological disability - after traffic accidents - in young adults, Charcot would not be surprised if he saw how patients live today who practically evicted then. These patients, who experience as their own body - it is an autoimmune disease - attacks myelin, a fatty substance that covers the axons of nerve cells and which is essential for proper nerve transmission, have been available for about a decade. Treatments that allow you to park the idea of ending your days in a wheelchair forever.
However, not everything is done in the fight against multiple sclerosis. The direct involvement of doctors and patients in the management of their disease is critical for it to impact as little as possible on their quality of life, as was evident in the roundtable asking for more of living with multiple sclerosis, held within the framework of the Congress.
Beyond the image that films like Mar Adentro have transferred from the disease - in which the character played by Belén Rueda suffered it and supported Ramón Sampedro in his fight for euthanasia - many things are not known about multiple sclerosis and whose diffusion can help almost as much as scientific advances. Staying in a wheelchair is not the primary problem.
Although the possibility of ending up in a wheelchair is what most scares those affected by multiple sclerosis at first, it is not disability related to mobility that most worries the sick. According to a study published in the Multiple Sclerosis Journal, fatigue or fatigue is one of the symptoms that most deteriorate the quality of life of these patients.
The second, hot on his heels, cognitive alterations. It was said at the conference by Shoshanna P., a victim from the United Kingdom: “People think of physical limitations when talking about disability, but I wish it were only the legs. I wish I could drive, have a social life, a normal memory, not suffer anxiety or depression … I have to cancel my social plans all the time, although I am lucky because people understand me. “For Charlotte T., another patient participant -in this time, French- are also the two most worrying symptoms, to which is added an inherent quality of the disease: unpredictability.
Celia Oreja, for the person in charge of the Multiple Sclerosis Reference Unit of the Hospital Clínico San Carlos in Madrid, is about symptoms that “are not recognized,” which influence the disability and also the working life. Also, he adds, these patients have problems with family and friends, which is encompassed as social cognition difficulties: “They do not perceive anger .”
It can be slowed down, but not reverse (at the moment)
About a decade ago, everything changed for the patients of this disease, with the entry of new drugs much more effective in achieving the only goal made so far concerning multiple sclerosis: delay their progress and try not to occur new lesions in the brain. However, the real challenge is to find a way to reverse the damage produced by the immune system itself; that is, to make the damaged myelin reappear almost as if by magic.
“At the time, there was an anti-lingo monoclonal antibody from which results in an extensive study was presented, in phase III - the last of the clinical investigation - but it failed”They are now trying it again, because it is the only one that showed something in that sense, although in this Congress studies with promising new alternatives are being presented, but they are still in the early phases of clinical research.
There are many drugs, but it is not easy to decide on one
Even if only to slow down, the reality is that the therapeutic arsenal against multiple sclerosis is vast. According to Oreja, there are seven drugs in the first line and four in the second, but opting for one or the other is not easy since, according to the neurologist, there is a shortage of biomarkers that indicate which is the most appropriate. It is a reality that patients also live. “It is important to get involved because there are many options. Sometimes I would like the doctor to tell me” you have to take this, “but it should not be like that,” reflects Shoshanna.
The medical director of the Center for Multiple Sclerosis Overpelt of Belgium, Bart Van Wijmeersch, explains that the treatment “is the most important part of the work.” “It’s responsibility, you can see bad relapses, you have to guess what kind of fire you are facing and according to that use a bucket of water or call the firemen, but neither one nor the other is good if it does not fit the reality. “
For her part, the director of medical research at the EM Central Texas clinic, Lori Mayer, emphasizes: “It is essential to take time to make a balance between the effects and what you get, the long-term safety data must be very present. “
An example of which the decision is not easy when opting for one or another route of administration. A few years ago, the entry of oral medications, which avoided annoying injections, was seen as a significant revolution. However, according to Ear, this is not something that satisfies all patients: “Some feel that taking a pill a day is a permanent reminder of their disease and prefer biweekly injectables.”
Women can have children but planning
They say that pregnancy is one of the most placid stages of women, but in the case of multiple sclerosis patients, this statement is multiplied by ten. As Oreja explains, during that period they do not have outbreaks, nor does the activity increase them. The problem, of course, is that none of the drugs to control multiple sclerosis can be taken during pregnancy, so they can not leave the chance of staying pregnant at random, it’s something they have to plan with their doctor.
Since this is not something that always happens, the results of a study presented at the Congress have shown that one of the existing therapeutic options for multiple sclerosis - teriflunomide, an oral drug - does not increase the risk of complications in pregnancy in women with multiple sclerosis of childbearing age. That is to say, if a woman were to become pregnant by mistake and the doctor subsequently withdrew the medication - nothing else to know about her condition - the fetus would not suffer any problems.
In any case, Oreja insists that family planning is the most appropriate and that pregnancy is not advised to a woman unless it has passed between one year and 18 months without suffering an outbreak. In these circumstances, you will be notified to stop taking the drug and sometimes you will remove any trace of it in blood with activated charcoal - which can also be done with the teriflunomide - and will be given no more than six months to achieve a natural pregnancy. “If this time passes and it does not succeed, it is normal to refer them to the fertility unit, “ concludes the neurologist.
They have a life expectancy five years younger
The big question that a multiple sclerosis patient becomes when diagnosed is: “will I live as much as a healthy person ?” To this issue, they have tried to answer different studies. One of the most recent, published in the Journal of Neurology, Neurosurgery, and Psychiatry, figures in seven years less life expectancy of these patients compared with healthy people.
But this work has patients who have continued for 60 years and everything points to the number could fall once it is comprehensive early treatment, the most common strategy at this time.
Early diagnosis is essential
In addition to the pharmacological advances, the other significant milestone in the management of multiple sclerosis has been the first diagnosis and the change of therapeutic strategy in this sense. According to Van Wijmeersch explains, this is precisely the key to a person diagnosed with the disease can make an ordinary life despite suffering it. If previously, the tendency was to use drugs when symptoms appeared, the evidence now encourages them to use them to avoid brain injuries that occur almost invisibly.