Viewing 13 posts - 1 through 13 (of 13 total)
  • #73948
    Information about conditions

    From discussions with visitors to the Muscular Dystrophy Campaign website it has been suggested that we develop the types of MD pages further so that the current pages with information about specific conditions contains information from across the website.

    For example, that research related to Becker might also be located within the Becker page in the types of muscular dystrophy section.

    http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/94_becker_muscular_dystrophy

    I wanted to get feedback on

    1. what you think about this idea
    2. What information currently on the site might be added to these pages
    3. What extra information you think would be useful to visitors to their condition page

    Thank you for your help

    Dan

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82091
    Re: Information about conditions

    I really like the idea about adding research news to the types of MD pages. People will naturally migrate to a page specific to their type, and as well as having info abut the condition, its inheritances, factors, progressions etc. It would add an up-beat positive element if there is research news as well.

    It is not practicable to add info about aids and equipment as I assume the charity cannot be seen to endorse a particular piece/brand of kit, and with every case being unique it may not be appropriate for their need.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #82092
    Re: Information about conditions

    Excellent idea.

    As we usually start newcomers off by directing them to the
    types of MD pages it would be good if this led to other
    things. Maybe links to other external websites as well.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82093
    Re: Information about conditions

    @taungfox wrote:

    Excellent idea.

    As we usually start newcomers off by directing them to the
    types of MD pages it would be good if this led to other
    things. Maybe links to other external websites as well.

    What links would you like to see here? Would it be to other forums or blogs maybe, what websites do you think should be accessible from here?

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82094
    Re: Information about conditions

    @InotI wrote:

    @taungfox wrote:
    Excellent idea.
    What links would you like to see here? Would it be to other forums or blogs maybe, what websites do you think should be accessible from here?

    Excellent idea of yours.

    Blogs and forums are just the kind of thing.

    For instance yesterday someone was asking about PGD. One of our posters
    Shona is THE expert on this subject and she does have a superb blog on the subject, but I
    could not think how to get to it.

    There are forums for all kind of aspects that go into details we cannot both inj
    the medical and general interest spheres.

    Sp yes that sort of thing.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82095
    Re: Information about conditions

    bloggs and forums…..

    just found a FSH one….

    http://health.groups.yahoo.com/group/fshsociety/messages/25051?viscount=-30&l=1

    here is Shona’s PPGD blog :-

    http://apgdblog.blogspot.com/

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82096
    Re: Information about conditions

    Thanks,

    :idea: If anyone else has links for other blogs forums they go on which they think are good – please add these here.

    Generally let me know if you have any ideas about other content or information that you would like to be accessible from the condition pages. It can be content curruntly on the website or information, or links and content which we don’t have which you would like to see.

    D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82097
    Re: Information about conditions

    Myotonic Dystrophy support Group ;-

    http://www.myotonicdystrophysupportgroup.org/

    I.B.M. Support Group :-

    http://www.myositissupportgroup.org/IBM/index.html

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82098
    Re: Information about conditions

    There are two blogs that have been mentioned on here, I think the bloggers are both TalkMD members.

    http://howtobeaninspiration.blogspot.com/ Stephen Deal writes about his life, he has FSH MD and I have found it touching, funny and inspirational.

    http://www.alifeworthlivingfilm.com/ This is a blog about the making of a film: A Life Worth Living: Pushing the Limits of Duchenne.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #82099
    Re: Information about conditions

    Just had a thought.

    Another useful link from the types of MD pages could be
    to the network of MD Regional Care Advisors.

    People who come to the forum are often very worried and we can answer
    a few questions but sometimes they really need to have a face to face
    chat with someone who knows the subject inside out.

    Sometimes they are panicking neddlessly and fearing the worst. Even
    a short phone conversation would help.

    The Regional care Advisros are very good and can fufill this function
    if people knew they were there.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82100
    Re: Information about conditions

    Excellent points. Yes signposting to the regional care advisors from this section would be useful.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82101
    Re: Information about conditions

    I’m glad the MD Types pages are being revisited! Every 6 months or so I have a “check” on the Minicore (multicore) Myopathy page to see if there’s any “new” developements. I was so excited when it was updated for the first time with it’s current information in 2004. But hasn’t had any new information on this particular type since :( So I’m left to browse Google again for any further developements which are particularly hard to come by for the rarer kinds of MD. I’ve been working on the first organisation specifically for Minicore Myopathy with another person with the same diagnosis so getting as much information as possible is extremely important. Update ones! How often would you say the types pages are revisited anyway? Are they updated regularly with the latest known facts/info on the conditions? Adding a link to research to the specific types is a great way to go :D … also maybe link to certain TalkMD threads that have i.e beckers mentioned so people find it easier to get intouch.

    For example:
    A newly diagnosed person with Beckers finds the MDC website, gets right on the Beckers section. Reads all about it and bam at the bottom/side wherever links to direct discussions from other people going through the exactly same thing just one click away!!

    Also I thought of written material. Say a link on each types page to directly order the leaflet on that type to read later/read with the family/where theres not normally access to a computer. Having links on these specific pages instead of trailing around the whole MD website to find it may be more practical.

    ambitiousturtle24
    Participant
    Posts: 69
    Joined: 18/03/2011
    #82102
    Re: Information about conditions

    @ambitiousturtle24 wrote:

    I’m glad the MD Types pages are being revisited! Every 6 months or so I have a “check” on the Minicore (multicore) Myopathy page to see if there’s any “new” developements. I was so excited when it was updated for the first time with it’s current information in 2004. But hasn’t had any new information on this particular type since :( So I’m left to browse Google again for any further developements which are particularly hard to come by for the rarer kinds of MD. I’ve been working on the first organisation specifically for Minicore Myopathy with another person with the same diagnosis so getting as much information as possible is extremely important. Update ones! How often would you say the types pages are revisited anyway? Are they updated regularly with the latest known facts/info on the conditions? Adding a link to research to the specific types is a great way to go :D … also maybe link to certain TalkMD threads that have i.e beckers mentioned so people find it easier to get intouch.

    For example:
    A newly diagnosed person with Beckers finds the MDC website, gets right on the Beckers section. Reads all about it and bam at the bottom/side wherever links to direct discussions from other people going through the exactly same thing just one click away!!

    Also I thought of written material. Say a link on each types page to directly order the leaflet on that type to read later/read with the family/where theres not normally access to a computer. Having links on these specific pages instead of trailing around the whole MD website to find it may be more practical.

    Good ideas.

    I think in the past the condition pages were thought of as a place to provide an overview of the key information, while the research news would provide latest developments. However in reviewing these pages I am looking at making them into a hub where as much information – including latest research and clinical trials – are collected so that peopel can return and find updates as and when they want.

    I had considered making the fact sheets available within the specific condition pages. I will also look into the possibility of linking to specific forum threads. Alternatively I might introduce the forum within these pages with a quote from someone in the forum and link through making it clear that the forum is place where people can ask questions and seek advice.

    If you have any other thoughts about other content which would be useful here then let me know as these are all good points. :D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
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