It is also known as ‘disease of a thousand faces’just because It manifests itself in a number of ways, from skin rashes to joint pain; is polymorphic, difficult to diagnose and can be confused with other diseases: the Systemic lupus erythematosus (Les) it is an autoimmune disease that 23 thousand people in Italy and 5 million in the world face every day. It mainly affects young women of childbearing age. It is a complex disease of which the causes are unknown, even if the influence of genetic and environmental factors seems to be ascertained. It especially affects the skin, joints, kidneys, blood and tissues, and can have very serious consequences. A survey by EMG sponsored by AstraZeneca found that only two out of 10 Italians know what Les is; a third think it is easy to diagnose, and the majority are not informed about the time required for a diagnosis (73% do not know and 25% believe it is less than 3 years, when instead it takes an average of 6).
“There early diagnosis is crucial – explains Rosa Pelissero, president of the Italian Les Odv Group – and more generally an effort by everyone is required to make the disease known, to talk about it to friends and work colleagues, because the pain and anguish generated by Les are not simple to understand. If you get sick you need to reschedule your life, balance between drugs and medical examinations, but it is still possible to live a full life, without major sacrifices “.
Systemic lupus erythematosus can have a profound impact on the quality of life of patients, as recognized by the majority of the representative sample of the survey (for 82% autoimmune diseases have negative effects on the daily life of patients, for 79% on the work and career, 71% on sociability and 69% on the possibility of having a family), however the system in which patients move is not adequate to guarantee patients daily coexistence with their pathology while maintaining a normal lifestyle.
“Les is different from person to person and causes different reactions and symptoms – underlines Pelissero – There are those who, for example, have a joint problem and those who have a respiratory problem, for this reason they are more multidisciplinary centers are needed, where there is the right specialist for each manifestation of the disease“. The president of the association points out that” today in Italy we finance 10 clinics, but we continue to put pressure on the institutions to increase them, because today many patients have to travel even for hundreds of kilometers, with great inconveniences such as the loss of days of work. , because there are few specialist centers “.
In particular, the need for continuous care (30% of the interviewees), the lack of knowledge of the disease and the difficulties of diagnosis are considered by the survey participants to be the main problems of patients with Les, but another theme is the complexity of the therapies. In the treatment of Lupus they come many drugs used in combination with each other, administered according to the symptoms accused by the patient: anti-inflammatories, antimalarials, corticosteroids and immunosuppressants, and only in recent years biological drugs “which must be prescribed by the specialist to the most suitable patient and have been a great innovation, helping most patients to stop cortisone”, Pelissero points out. In this regard, a result that the survey promoters define as “surprising” is that only three out of 10 Italians know biological therapies, while among those who believe they know them there is 26% who define them as “natural therapies”, while 16 % “more targeted”.
“If you are afraid or have doubts about their use – warns Pelissero – it is counterproductive to search for information on Google or on chats, but you have to go to a specialist, who knows how to choose and dose drugs according to the case”.
Today is World Lupus Day, World Lupus Dayand for the occasion “The Italian Les Odv Group will set up stalls throughout Italy where it will be possible to buy a violet plant. The volunteers of the association will be available for clarification and information on the disease – assures the president – To find out more there is also the toll-free number 800 227978 “.
The EMG survey is released in conjunction with the World Day and the results confirm how much more can be done to raise awareness among citizens and institutions on this pathology. Evidence has shown that there is still much to be done to increase awareness of the disease and improve treatments, actions that require a synergistic action by all the actors involved.
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