Sergio Amadeu da Silveira - Cidadania e Redes Digitais

eng
c i t i z e n s h i p a n d d i g i t a l n e t w o r k s
surrounds medicine as a corpus of knowledge and as a practice. First, many physicians
consult the web communities of interest in a regular basis in search of knowledge
that can improve and complete their formation as specialists. By increasing
their knowledge, they improve the quality of their medical practice. By better knowing
the psychology of the patients and the problems, feelings and anxieties expressed
in the forums, they find ways of making the patient an ally in the healing process.
On the other hand, physicians are forced to democratize their professional exercise
by having to discuss diagnoses and treatments with their patients. Such e-patients
end up being converted into experience experts, authentic knowledge producers
which, as such, claim to have a voice in all aspects related to their disease 8 .
8. I want to reinforce my argument on the importance of the communities of interest with a personal
testimony. Some months ago, the author of this article suffered an inflammatory process that affected
many of his articulations. Doctors thought that it was a traumatic problem, consequence of sportsrelated
injuries. Various weeks of therapy only made the situation worse, to the point of not being able
to walk or raise the left arm. Previous physical examinations (blood analysis, magnetic resonances, radiography
etc.) confirmed a serious diagnosis: ankylosing spondilytis. It is an auto-immune, paralyzing,
incurable disease; a genetic disease related to the HLA-B27 antigen, which can affect a patient starting
from his backbone, and spreading through all body articulations until rendering him completely immobilized.
From this moment, I started researching on the Internet the mechanisms of the disease, as
well as alternative hypotheses on its origin. I stumbled upon an extraordinary amount of individual experiences
that coincided with the benefits and losses of prescription medicines, in addition to the information
offered by the laboratories. I also stumbled upon enormous surprises on the very etiology of the
disease. Physicians of great prestige, such as Doctors J. Signalet and R. Ebringer, defended unorthodox
hypotheses, not accepted by official medicine. Both suggested the presence of the bacteria Klebsiella
pneumoniae as a trigger of the disease, and proposed a kind of treatment starting from the “ancestral
diet”, eliminating fried foods, dairy products, and fast food, increasing the ingestion of raw, natural,
non-transgenic products cooked at low temperature. Dr. Escudero’s noesitherapy taught me relaxing
techniques to reduce to a minimum the administration of non-steroidal anti-inflammatory drugs.
Thousands of web pages highlighted the extreme importance of foods. Many foods have inflammatory
effect, while others have the opposite effect. A radical diet would multiply the effect of prescription
medicines. In websites of interest, specially that of the Spondylitis Association of America, information
was perfectly organized according to scientific criteria, and, overall, filtered and selected according to
its practical utility. Definitely, the peripheral knowledge accumulated in the Network about this disease
allowed me to overcome it and to have a normal life. My rehabilitation and rheumatology physicians
of Hospital Doce de Octubre in Madrid qualified the process as a “spectacular evolution.” They are
excellent professionals in their specialties, but they admit that their formation do not extend to other
crucial areas for the treatment of the patients. The reader must notice a detail present throughout this
report. All orientations found were free of charge. The laboratories that sell drugs of very high cost for
the treatment of auto-immune diseases such as ankylosing spondilytis are not interested in knowing
if an anti-inflammatory diet and other techniques can accelerate and radically improve the response
to prescription medicines, or significantly reduce the recommended doses. The pharmaceutical laboratories
also are not financially interested in investigating rare diseases affecting a reduced amount of
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