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Social Networking and Neuromuscular Disease
Social networking has made connecting with others easier than ever. This may be especially true for those who have a significant disability which limits opportunities to interact with others in person, including many people with neuromuscular disease.
Social networking refers to the use of the internet to connect with others, particularly on message boards and forums designed to make it easy to find others with similar interests and/or situations. These networks often allow people to communicate in a variety of ways including posting messages and photographs and creating a blog.
Neuromuscular disease often leads to feelings of isolation. When first diagnosed with Charcot Marie Tooth, I knew no one else with this disease. I had never even heard of this disease! In my advocacy work, I have spoken with many individuals who had similar experiences.
I originally connected with others through the message boards at the MDA, which helped me to find the information I needed while decreasing my feeling of being alone in my experience. The myMDA message boards are no longer available, but the MDA facebook page has taken its place.
Social networking can offer helpful opportunities to interact with others with neuromuscular disease. Social networking has also been increasingly used as a powerful outreach, advocacy, teaching, and fundraising tool, for example, the ALS Ice Bucket Challenge which occurred in 2014. Currently, I interact regularly on a couple of networks, and maintain the Neuromuscular Diseases forum here at BellaOnline.
Remember, however, that the same safety cautions hold for sites specific to neuromuscular disease or disability as to other social network sites. Privacy and online safety remains a concern. Also, remember to double check any information learned on message boards, as this information may or may not be accurate or current. For more on online safety and social networks, see the USA.gov article listed below under resources.
In the past few years, a number of social networking sites specific to neuromuscular disease have started. Most likely, you will need to sign up for a free account in order to post on the boards. Here are just a few, along with where you can access them.
The Charcot Marie Tooth Association recently revealed their new community, which includes the opportunity for online support groups. These boards can be found at: http://cmtausa.org/index.php?option=com_community&view=frontpage&Itemid=31
CMTUS provides information regarding CMT “strategies, treatment and research” in a network format: http://health.groups.yahoo.com/group/CMTUS/
You can also find many facebook pages specific to neuromuscular disease on facebook. A small sample of facebook pages specific to neuromuscular includes:
Charcot Marie Tooth Association: https://www.facebook.com/home.php#!/CMTAssociation?fref=ts
Muscular Dystrophy Association page: https://www.facebook.com/MDANational?fref=ts
Muscular Dystrophy Awareness: https://www.facebook.com/pages/Muscular-Dystrophy-Awareness/686478618065592?fref=ts
Muscular Dystrophy Canada: https://www.facebook.com/muscle.ca?fref=ts
Blogs have also become a popular way to communicate and network with others with similar interests. For a blog specific to CMT, visit Living Well with CMT (Charcot Marie Tooth) Disorder: https://cmtnyus.wordpress.com/
Finally, for support communities specific to those with rare disease, including several of the neuromuscular disease, visit Ben’s Friends: http://www.bensfriends.org/ . For a site specializing in helping individuals with chronic illness connect with family and friends, with privacy protections in place, visit: http://www.caringbridge.org/
I hope that this small sample of the social networking opportunities help you to start connecting. The Neuromuscular Diseases site at BellaOnline can be linked from the button at the bottom of this page. I hope to “meet” you there!
Murphy, M., (2011). Social Networking and Disability. Quest Vol. 18, No. 2. Retrieved 5/29/15 from http://quest.mda.org/article/social-networking-and-disability .
Navarro, E., (2007). Into the Internet Future. Quest Vol. 14, No. 4. Retrieved 5/29/15 from http://quest.mda.org/article/internet-future
Nieto, A., (2011). Let’s All Harness the Power of Social Media in the Fight Against ALS. MDA/ALS Newsmagazine. http://alsn.mda.org/article/lets-all-harness-power-social-media-fight-against-als
Reijonen, J., (n.d.). Ice bucket challenge for ALS. Retrieved 5/29/15 from http://www.bellaonline.com/articles/art183955.asp
USA.gov, (2015). Safer Computing and Social Networks. http://www.usa.gov/topics/science/communications/internet/social-networks.shtml
Content copyright © 2015 by Jori Reijonen, Ph.D.. All rights reserved.
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