The ability to open a browser and have the world wide web at our fingertips has interconnected and empowered us to an extent that we are still just beginning to understand.
Its effects have pervaded the world of medicine and transformed the experiences of patients with rare illnesses.
It has allowed patients to more easily find resources, connect with groups online and create a deeper sense of community through their illnesses. These online groups provide a forum for support and information, often sharing information about everything from living with disease to increasing awareness about clinical trials and important research.
Many well-established social networks for health, such as PatientsLikeMe, provide a resource for people living with disease to connect with others in similar situations. But what happens when you have no diagnosis?
Every year people suffer from illnesses that have no diagnosis. It’s a frustrating and isolating experience for patients who are desperate for answers. In response, many have turned to less conventional social media outlets as a last resort for medical advice when traditional avenues have failed.
An excellent example of this is the case of Tess Bigelow. Born with a baffling genetic condition that caused developmental delays, gastrointestinal symptoms, and seizures, Bigelow’s disease evaded diagnosis. As a last resort, the Bigelows turned to Facebook. That post was then reposted on Reddit, which ultimately landed in front an individual who shared a lab with Dr. Christian Schaaf, assistant professor of molecular and human genetics at Baylor College of Medicine. Schaaf happened to be studying Bigelow’s specific genetic mutation. It took only about 24 hours for social media to do what years of medical tests could not.
Bigelow’s story highlights the important untapped potential of social media in medicine. While there are many hurdles to overcome in the area of privacy and security for health information, there are many benefits to a large, interconnected resource of medical data.
And, as this example shows, sometimes answers can come from the least expected source.
-By Leah Fowler, J.D., health policy program manager for the Center for Medical Ethics and Health Policy at Baylor