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Social networking tools provide many different capabilities that can be used to connect participating individuals. They enable people to connect across geographic boundaries and share information thereby giving opportunities to for differing groups to collectively address challenges (Nithithanatchinnapat et al., 2016; Bán et al., 2018; Leong, 2015). Online communities allow for knowledge to diffuse across groups, and we posit that as these technologies have developed, scholars should periodically reassess how usage may have changed over time.
Chronic diseases represent a wide range of conditions that require long-term management (Patel et al., 2015). One important category of chronic diseases is related to genetic disorders. The lifelong duration of genetic disorders creates unique opportunities around which virtual communities can form and operate. Often genetic disorders are incurable, and treatments are geared toward system management. Physical therapy or pain-relieving medications are common tools of pain management, but in the course of daily life patients also often discover effective non-medical solutions for decreasing pain. These unique methods of reducing pain are often shared across various websites and social media platforms. Our research summarizes the findings from literature regarding the efficacy of sharing pain-related therapies through different social networking services among genetic-disordered patients.
Genetic disorders encompass an enormous group of conditions, most of which do not have a cure. The spectrum of diseases is wide and for every organ system, there exists an entire category of disease. In addition to medical challenges, there exists a definite lack of market incentives for treatment and cure. While the lifespan of people with genetic disorders can be the same as the life expectancy of healthy people, their quality of their life may be different. Since there are often no known cures for genetic disorders, patients mostly try to maintain or slow down the degradation of their quality of life. To this end, the objective of most treatments is to reduce the symptoms of the genetic disorders (Genetic and Rare Diseases Information Center Report, 2017).
Researchers have identified ways in which social media can influence health-related activities. The general benefits of social media in promoting community-based healthcare support have been addressed in the extant literature. For example, the interactive nature of content creation supports the introduction of more voices into healthcare-related knowledge development (Miller and Tucker 2013). The difficulty of managing genetic diseases presents unique challenges and opportunities regarding the affordances of social media, and the community of those suffering from these diseases represents a unique subset of the broader healthcare industry. The literature review section of this paper highlights the body of knowledge regarding the specific subset of patients using social media to support the management of genetic diseases.