Multiple Sclerosis Questions at BlogWorld: RRMS vs. PPMS

  • Last week I was away, attending the BlogWorld and New Media Expo 2010 in Las Vegas.  Actually I was speaking on a panel discussing - Patient Blogging and Disease Awareness: Sickness and Health on the Web.  The description of our panel:

    • Patient bloggers and online advocates are finding new ways to connect, launch advocacy and disease awareness campaigns, and use web-based tools to manage chronic conditions.  Their influence has grown to the point where they are even being approached by the pharmaceutical industry to become involved in sponsored initiatives. Does this mean a larger voice for patient experiences and viewpoints or does it hinder trust in the patient community? This panel looks at issues involved in working on both independent and sponsored advocacy projects, and explores the issue of transparency in patient blogging.

     

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    Today’s post is not about the session itself (which brings up many questions), but comes from a discussion I had with one of the attendees who was not directly involved in health-related social media activities on the web.  This was very good to know, that our Health Social Media (blogging/forums/facebook/tweets/etc) world is of interest to those outside our community.  At least I thought this interesting and confirming.

     

    This gentleman asked our panel some questions, specifically he directed some of his questions to me.  Why?  Because his brother has multiple sclerosis.

     

    Here was a family member whose business it is to engage online through social media and to consult others who wish to do the same for their businesses.  The brother wanted to know what he could do to help his brother who NEVER talks about his MS.  In fact the brother doesn’t’ even tell people that he has MS, not even at work while it may be impacting his job.

     

    After the panel, this man approached me for more discussion.  I had a chance to ask him a few questions.  One of those early questions was:

     

    “What type of MS does your brother have?” 

    (Don’t we always each other the same question?)

     

    He responded with a quizzical look.  After follow-up questions it became apparent that his brother has the Primary Progressive Multiple Sclerosis (PPMS) form of MS.  He was diagnosed in his 50’s.  He is male.  He has gradually gotten worse.  He doesn’t experience remission to any extent.  He has a very rough road ahead.

     

    I suggested that his brother contact me (if he wanted to) and I could connect him with other people who are living with PPMS.  But does it really matter if an individual connects with another person who has their EXACT form of the disease?

     

    I am friends with a few MS bloggers who live with PPMS, some quite atypical.  Immediately comes to mind Marc of WheelchairKamikaze, Mitch of Enjoying the Ride, and Herrad of Access Denied-Living with Multiple Sclerosis.  These are the folks who I would recommend are the experts on living with Primary Progressive MS.

     

    Marc, Mitch, and Herrad are the patient bloggers who bring greater awareness of issues surrounding living with PPMS.  They have first-hand knowledge.  It is important to help spread awareness of the form of our disease which affects around 10-15% of our MS population.

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    In the next few posts, I will be interviewing bloggers living with progressive forms of the disease.  My hope is that we will gain a better understanding of what MS is to all of us (in our own forms) and to help spread that precious knowledge here on the internet where others can find it and us.

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: October 21, 2010