g Text Version
Beauty & Self
Books & Music
Food & Wine
Health & Fitness
Hobbies & Crafts
Home & Garden
News & Politics
Religion & Spirituality
Travel & Culture
TV & Movies

Bored? Games!
Take a Quiz
Rate My Photo

Kidney Disease
Today in History
Distance Learning

All times in EST

Full Schedule
g Neuromuscular Diseases Site

BellaOnline's Neuromuscular Diseases Editor


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

Add Social+Networking+and+Neuromuscular+Disease to Twitter Add Social+Networking+and+Neuromuscular+Disease to Facebook Add Social+Networking+and+Neuromuscular+Disease to MySpace Add Social+Networking+and+Neuromuscular+Disease to Del.icio.us Digg Social+Networking+and+Neuromuscular+Disease Add Social+Networking+and+Neuromuscular+Disease to Yahoo My Web Add Social+Networking+and+Neuromuscular+Disease to Google Bookmarks Add Social+Networking+and+Neuromuscular+Disease to Stumbleupon Add Social+Networking+and+Neuromuscular+Disease to Reddit

Learn more about CaringBridge.
Genetic Testing - To test or not to test?
What is translational research?
Related Articles
Editor's Picks Articles
Top Ten Articles
Previous Features
Site Map

For FREE email updates, subscribe to the Neuromuscular Diseases Newsletter

Past Issues

Printer Friendly
tell friend
Tell a Friend
Email Editor

Content copyright © 2015 by Jori Reijonen, Ph.D.. All rights reserved.
This content was written by Jori Reijonen, Ph.D.. If you wish to use this content in any manner, you need written permission. Contact Jori Reijonen, Ph.D. for details.


g features
21st Century Cures Initiative - Update

Respecting My Own Physical Limitations

Influenza Season 2015-2016

Archives | Site Map


Past Issues

Less than Monthly

BellaOnline on Facebook

| About BellaOnline | Privacy Policy | Advertising | Become an Editor |
Website copyright © 2015 Minerva WebWorks LLC. All rights reserved.

BellaOnline Editor