some 47 000 people are suffering from multiple sclerosis In Spain, a small proportion of nearly 2.5 million people who are estimated to suffer from this disease throughout the planet. The causes that cause it are still unknown and the disease is not a cure but the progress of both research and new drugs has opened up new horizons for people who may face the usual "dramatic disease" of life and aware of its limitations.
These were some of the conclusions that the participants of the meeting organized by El Confidencial and Roche Farma had decided to analyze what their current situation is. against the disease and from the point of view of patients.
"Drug development has evolved over the last few years, you have to make people aware of it de-dramatize the disease. People with multiple sclerosis can lead to normal life and can be helped, he said. Carmen Valls, Head of the Madrid Foundation for Multiple Sclerosis.
On the same line, other speakers spoke. Marta Ortiz, the physician Hospital Clínico San Carlos, stressed " great development suffer from treatment in the last 20 years ". Alberto Morellhead of the University Hospital's pharmacy service emphasized that the sick "are people who are experts who do their job" and require the need pedagogy that the message warms up among the people: "If not," he complained, "the population believes in sclerosis it causes disability Soon after that. " Virginia MeccaThe Neurologist at the University Hospital in Prinsessa recalled that although there are "pending topics", we must be optimistic about the "living, moving and many observations" in the research scenario.
One of the latest findings is from pharmaceutical companies. Ocrelithumab is a Medicines already available in Spain administered intravenously every six months and designed to function on immune cells of lymphocytes, CD20 positive B cells, which are believed to have a decisive influence on the damage they suffer myelin – a substance that surrounds the nerve cells' axons – and may cause injury to multiple sclerosis patients.
that Sara Martino, The commercial leader of Roche Farma's central nervous system, drugs such as Ocrelizumab, give patients the opportunity to live without need they are permanently awaiting their illness. "They are able to maintain a normalized life, which is one way to help them achieve the rhythm of life. lowering the cost of money, because there is no follow-up and the patient does not have to return so often to the hearing. "
Information to stop mythologies
The fact that multiple sclerosis is usually diagnosed at age 20-40 is a problem for patients who encounter an obstacle in their life when you do not have to be ill, "Mecca acknowledged. The neurologist explained that the social perception is that these types of ailments "affect elderly people and not people who they are starting projects personal, work or family ".
And in line, Carmen Valls referred to one of the large walls that patients encounter: rejection in the labor market. "They want to continue their normal life and it is important for employers to know this they can do it, because it has become a huge disadvantage to look for work. Nobody will hire you if you explain that every other day or two you have to go to the hospital, "he complained.
To avoid this situation, several campaigns have been launched on Change.org to collect signatures requesting central and autonomous entities grants 33% disability concerned. "It would be easier to hire them if the company could reduce it," Valls acknowledged.
Denial of the disease is a delicate point that patients usually go through. He acknowledged Marta Ortiz, who said it was essential to "respect the patient's times", who must go to the "abnormal" process from the age of diagnosis. But when the condition was equated, the nurse reminded the patient of the importance of self-care: "They are central training, lead a healthy life, a real diet, use as much as possible and avoid toxic habits ".
To avoid these practices, Morell admitted this information An important factor for the patient is to get the best possible life: "It's important that you know that the settings you have set for you work in the long term, do not stop what works well because it still works, but you have to take into account weight of sense vs. knowledge. When you get sick, you change your life and they told you one thing on the other and one on the other … "At this point, according to the pharmacist's chief, it is important that the doctor knows what pseudotherapies they want to test their patients so they can report their harmful effects.
In the face of false miracles, Morell recalled that we live in an instant, "where the drug time is very short." Two years after the novelty has begun, there are five others that are above. "At the same time, Meca emphasized"wide Arsenal drug"When doctors today and emphasized mentality change in treating treatments:" It should be done when they are good because the question we are waiting to avoid disability. "
Almost the same life expectancy
Answer a million dollar questionwhen fitness disease? -, everyone in the audience reminded me that there is nothing. "It is very difficult to talk about the amount of research, we create false expectations, and I can not say whether he has a cure because we do not even know if we can avoid it." We know how to deal with it, "said La Princesan neurologist.
Again, the information coefficient came up. "There are initiatives like Meet EMET to reduce ignorance around the disease, and in this initiative, the disease is described as a very big monster that when you report to yourself, it will be reduced. The disease has diminished because it is always there, because it controls it, "Ortiz explained.
Although the quality of life is not the same as a healthy person, the table replicates that life expectancy is currently "reduced by four or five years". Before, as Morell recalls, "it was an obstacle: now it's just a conditioner; you have children, work, sport … Innovation in this field has been tremendous. "A hopeful message that covers the feelings of everyone at the table: despite its seriousness, multiple sclerosis is a disease that can live with quality of life every time.