Living with a chronic illness requires a commitment. After the diagnosis, the patient and her relatives face an unknown situation in which they must learn to become familiar with the disease, in general, and with its specific symptoms, in particular. If, in addition, it is a pathology that occurs with outbreaks and that can have multiple manifestations, it is even more difficult to understand its evolution and management.
In this context, the Internet has revealed itself as a great help for patients, but also as a source of misinformation. The doctor google It is always there, at hand, offering us all kinds of advice, recommendations and remedies at the click of a button, which are not always reliable.
Discovering which sources deserve our trust is another lesson. And it also requires help. For this reason, patient associations, health professionals and pharmaceutical laboratories dedicate great efforts to help patients and make valuable content based on scientific evidence available to them. These contents, which are freely available on the Internet, are the antidote to health hoaxes that so easily go viral on websites and social networks.
In the case of certain chronic pathologies, new digital tools have been added to this quality information that can provide chronic patients and their families with a great service in terms of comprehensive health care. They are portals and applications for mobile devices that offer training resources and that, on occasions, can open a communication channel between doctor and patient from which to raise questions and find answers.
It is a complex and unpredictable autoimmune disease that can affect anyone at any time in their lives, but it occurs mostly in women in the reproductive stage.
This is the case with systemic lupus erythematosus (SLE). This type of lupus -the most frequent of all- is a complex and unpredictable autoimmune disease that can affect anyone at any time in their life, but which occurs mostly in women who are in the reproductive stage.
In people with SLE, certain mechanisms of the immune system are affected, so that they attack the body’s own tissues and cells as if they were a threat. As a result, different parts of the body can end up being damaged, such as joints, skin, kidneys, lungs, blood vessels, heart, brain… In addition, SLE can manifest itself in a different way in each patient -debilitating fatigue, shaped facial rash butterfly disease, joint pain…- so it is vitally important that each person has adequate care and treatment that makes possible better control over the disease and a better quality of life.
A diagnosis of lupus often causes confusion both in the patient and in their environment. It is common that they do not know the disease, or just a few basic notions, and that they do not even know what they should ask in the consultation. The help of patient associations is, in these initial moments, crucial. The Spanish Federation of Lupus (Felupus) has a web page dedicated to patients, where you can consult all the information regarding the disease, find out about news and access more useful resources for your day to day. The GSK pharmaceutical laboratory, which offers information about lupus on its patient portal, has also launched in November 2022 a new support program for patients living with systemic lupus erythematosus: ConéctaLES.
In it you can find information about SLE, as well as healthy living tips that can help keep flare-ups under control.
The ConéctaLES program, which has been endorsed by Felupus, is found within the MyGSK platform for patients. Its objective is to support patients with lupus through tools that help them take control of their disease, learn and train about it, so that they can make decisions during its course and improve their quality of life.
Along with educational information, the program also offers tools that can help improve patient autonomy; Thus, for example, videos and podcasts starring health professionals who are experts in SLE in which the knowledge of this disease and its management is deepened. And another key aspect is that it facilitates contact with patient associations: it serves as a bridge for support, help and communication. It is a living page that is kept up-to-date and always takes into account the needs of registered patients and healthcare professionals.