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Social Networking and Neuromuscular Disease

Social networking has made connecting with others easier than ever. This can be especially true for those who have significant disability limiting their 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 facebook group has taken its place. The MDA has continued to offer live chats (see web address below).

Social networking can offer great opportunities to interact with others with neuromuscular disease. Social networking has also been increasingly used as a powerful outreach, advocacy, teaching, and fundraising tool. I now 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 not always 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 Muscular Dystrophy Association offers live chats. Find the schedule at: http://www.mda.org/chat/calendar.html

The Charcot Marie Tooth Association includes the 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: http://www.facebook.com/MDANational
Muscular Dystrophy Campaign: http://www.facebook.com/MDANational#!/musculardystrophycampaign

Muscular Dystrophy Canada: https://www.facebook.com/musculardystrophycampaign#!/muscle.ca

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/

For support communities specific to those with rare disease, including several of the neuromuscular disease, visit Ben’s Friends: http://www.bensfriends.org/ .

Finally, 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!

Resources:

Murphy, M., (2011). Social Networking and Disability. Quest Vol. 18, No. 2. http://quest.mda.org/article/social-networking-and-disability . Retrieved 3/22/13.

Navarro, E., (2007). Into the Internet Future. Quest Vol. 14, No. 4. http://quest.mda.org/article/internet-future . Retrieved 3/22/13.

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 . Retrieved 3/22/13.

USA.gov, (2013). Internet and Social Networking Safety. http://www.usa.gov/topics/science/communications/internet/social-networks.shtml . Retrieved 3/22/13

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