Digital spaces and rare diseases
Keywords:
rare diseases, renal tubular acidosis, digital media, social networksAbstract
Introduction. Distal renal tubular acidosis (RTA) is a rare disease that provokes failure to thrive, calcium deposits in the kidney, muscular weakness and deafness. RTA is one of the more of seven thousand of rare diseases known around the world. Objective. Evaluate the web sites www.funatim.org.mx and www.acidosistubular.unam.mx, a Facebook page of followers and a YouTube channel, to contact patients with the diagnosis of RTA. Methods. The statistical analysis comprised the design of measurements, data collection and analysis. Results: Digital media attracted 3 patients with RTA and hundreds of families with false diagnosis. Most participants were women from Mexico City and Jalisco; digital publications was consulted by 113 countries. Some Facebook postings reached more than 20,000 users and more than 70,000 through the website during a period of 4 years. Conclusions: Social networks conformed a solid community to alert misdiagnosis. Through a request in change.org to the Ministry of Health, they achieved the publication: “Guide of clinical practices for the diagnosis and treatment of Renal Tubular Acidosis in pediatric patients”.
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