Tutorial Six: The internet and online communities

I have chosen to talk about a topic of interest which is Muscular Dystrophy.  In this post I will provide three online communities (which is only three out of the many available on the world wide web) for Muscular Dystrophy; this is to show what is available online, how useful information online is, and what people get out of these online communities I have chosen.

My first online community I would like to introduce is the MDJunction, you can view this website by clicking on this link http://www.mdjunction.com/duchenne-muscular-dystrophy.  MDJunction is a social network website set up for the purpose of patients, families, and friends to support one another, and communicate in dealing with health challenges.   The link I have added is for the Duchenne Muscular Dystrophy support group.  This support group interact with each other through forums/discussions.  Also available are diaries, videos, articles that might be useful to people to know they aren't alone in their experience of Duchenne Muschular Dystrophy and also people wanting to know more about Duchenne Muscular Dystrophy. 

The following is an example of the types of discussions that you might find on MDJunction

I have a nine year old son who has duchenne's and type one diabetes, to date i have found only one other child with both conditions. Looking to see if there is anyone else who may be able to help me learn more about the two.

My second online community I have chosen to share is the Muscular Dystrophy Association group found on the social networking site facebook http://www.facebook.com/MDANational?sk=wall.  To access this group you need to be a member of facebook.  Through this online facebook group you are able to comment on information posted on the page, view up to date information posted by the Muscular Dystrophy health agency, form and participate in discussions, and view links on youtube and twitter.  Here is an example of a discussion on facebook, whereby people interact with one another providing support and information: 

• I am looking for others who might have Pompe disease, it is one of the metabolic

  diseases of the muscles. no one understands what I go through each day because

  no one has ever even heard of this disease.

  about a week ago · Report

• Muscular Dystrophy AssociationHi *****, thanks for posting. Have you been in contact with your local MDA office? Or signed up for myMDA, our network of people we serve, families, etc.? Both those resources might put you in touch with others with similar experiences. You can find your local MDA office at www.mda.org/locate and you can sign up for myMDA atwww.mda.org/myMDA. I also encourage you to visit our website at http://www.mda.org/ and search Pompe disease, there's a good amount of information on treatment and research on the site. Thank you.

  
  

  My last online community I wish to share with you is one is a blog/book created by a person with Muscular dystrophy whom wanted to share and inspire others with Muscular dystrophy to live life to the full, think about the good things and share that you can still be independent (Muscular Dystrophy, 2011).  The following is an example of the type of posts formed on the website (Muscular Dystrophy, 2011): 

  
  

  Health

  • I don't care what you can't do anymore. What CAN you do?

  • A great tabletop hand cycle

  • Motivating to shower

  • Water is important

  • How wheelchair tennis improved my function

The potential ethical issues of all the online communities could be: 

• Lack of privacy of the users
• Using photos and information without permission 

The benefits these online communities provide over traditional geographical community are that everyone can participate on online discussions no matter where they might live, they just need a computer with internet access.

References

Life with Muscular Dystrophy. (2011). Catalog of All Posts. Retrieved March 27, 2011, from http://musculardystrophybook.com/