Updated: May 29, 2020
Thirty years ago, the idea of social media was science fiction…now, our modern society is shaped by social media. The new age of communication is through social media and we are all just trying to keep up—news organizations shift to more social media live video engagements as the masses shift their lives to online platforms. The modern stereotype associated with the generation of social media is that the youth wastes their time showing off for fake friends online, intelligence levels decline as proper English gets replaced by SIRI and acronyms and more keyboard warriors feel empowered to bully those they have never met through cyber bullying, but social media has also become a light in the darkness to some. Social media has benefited the rare disease community by giving them a way to connect, educate, and advocate on behalf of their rare diseases in ways that were never possible before. As my wife and I are rare disease advocates, social media is the biggest tool we use in order to engage our rare disease community and we would not have the power to make a difference if it wasn’t for social media.
The first and most important way social media benefits the rare disease community is the fact that it is an easy connection to the world. Rare diseases are very isolating to those who suffer from them. According to the US National Institutes of Health, in order for a disease to be rare, it must affect less than 200,000 individuals (Meyer, 2012). It is not unheard of for individuals with a rare disease to go their entire lives without meeting another individual affected by the same rare disease; in fact, even in the Age of Social Media my wife has still yet to meet someone in person with her same rare disease, Multiple Hereditary Exostoses. She was 22 once she finally met others with her rare disease on social media by sharing her experience with her MHE. Individuals suffering with a rare disease tend to experience a lot of isolation due to their conditions because of the fact that not much is known about it—they grow up isolated from their peers and then experience a life of doctors not knowing their conditions or how to help them. Social media has given rare disease patients a way to connect with individuals from around the world who have the same rare disease as them. The support groups that are on social media have given those with a rare disease a feeling of belonging, validation and support that can mean more than a treatment or cure (Meyer, 2012).
The next reason social media benefits the rare disease community is the way it allows for advocates to utilize it as a tool. The presence of social media has made it easy for rare disease patients to connect and organize with other rare disease patients and form support and advocacy groups that have no borders. The constant stream of communications creates a narrative that strengthens the rare disease community and allows a constant stream of knowledge and information to be passed through the community. The social media communities turn the rare disease patients into rare disease advocates who can advance the research known about their rare disease just by using their voices on social media (Social Media Used To Exchange Knowledge, 2016). When it comes to having a rare disease, information is sporadically known depending on doctor’s experience so social media allows rare disease patients to share what they have learned with others who may not have learned the same things.
The last reason social media benefits the rare disease community is by being the gateway for research. Rare disease advocates aren’t the only ones who use social media as a tool—rare disease researches do as well. Researchers find patient-run websites and support groups to be a great place to find participants for studies. Most rare disease research tends to be underfunded, so researchers greatly benefit from the relative ease and inexpensiveness social media provides. One perk for researchers is that the patient run websites and groups have already compiled the “large and demographically diverse patient groups” needed for research studies quicker and inexpensively compared to traditional outreach methods. Patient advocates are very passionate about their rare disease on social media, and are willing to help researchers discover anything that could further knowledge and treatments for their conditions. The NIH estimates there are an astounding 6,000-7,800 existing rare diseases, although an exact number will never been known as it is hard to keep data on rare diseases due to the rareness of the diseases (Mayo Clinic Finds Social Media Valuable, 2011).
In conclusion, social media has been a “godsend” to those with a rare disease (Meyer, 2012). The incorporation of social media to the rare community has changed the lives and outlooks of rare disease patients. Social media has connected the millions of souls who live with a rare disease and give them a safe place to feel validated and supported in their life with their conditions. Social media has also given a voice to the rare disease patients who stand up for their rare diseases, making them advocates who can advance knowledge and awareness as well as patient quality through social media. The patient leadership on social media also leads to advances in research for rare diseases as it makes easy partnerships between patients and researchers who all want the same thing—research and advances made on their rare disease. I have seen what social media has done on a personal scale for patients with rare diseases and it is truly unfathomable how much it can mean to them. Our rare disease advocacy group, R.A.R.E., is entirely based on social media and has helped many people living with MHE find their pride and their voice.
Marie & Marcus Dagenais-Lewis
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Mayo Clinic Finds Social Media Valuable Tool to Recruit Study Participants for Rare Diseases. (2011, August 30). EBSCOhost. Retrieved from http://web.a.ebscohost.com.proxy.cecybrary.com/ehost/detail/detail?vid=0&sid=aed0a3e5-6c1f-4de3-9d95-f99e0830bc5d@sdc-v-sessmgr03&bdata=JnNpdGU9ZWhvc3QtbGl2ZSZzY29wZT1zaXRl#AN=bizwire.c36296020&db=bwh
Meyer, E. (2012, June 21). Social media a godsend for those with rare diseases. Retrieved March 25, 2020, from https://proxy.cecybrary.com/login?url=https://search-proquest-com.proxy.cecybrary.com/docview/1021854904?accountid=144789
Social media used to exchange knowledge on rare diseases. (2016, March 22). Retrieved March 25, 2020, from https://proxy.cecybrary.com/login?url=https://search-proquest-com.proxy.cecybrary.com/docview/1774855199?accountid=144789