Tuesday, April 05, 2011

what's your EDSS score?

What’s your EDSS score? Could that ever become a Multiple Sclerosis version of ‘what’s your sign’ minus the 70’s disco and bell bottoms.

No one wants to be a number but we all are. From social security to pin numbers we ‘R’ numbers masquerading behind names.

With Multiple Sclerosis another number the EDSS (Kurtze Expanded Disability Status Scale) score becomes part of the collection. 

Yes, people argue about subjectivity of EDSS. However in the real world, Big Pharma has no problem using EDSS scores for promoting effectiveness of MS disease modifying drugs, EDSS scores are prominent in evaluating CCSVI results, and clinical trials world wide use EDSS scores as a common denominator. … In the blogosphere era wouldn’t an EDSS score at the top of a MS blog page help the search for shared experiences, information, and kindred situations?   

Even an EDSS calculator app is available for smart phones. How far are we from the Star Trek scenario, where you just wave your phone at someone with MS to read their EDSS score?

Multiple Sclerosis as a diagnosis is confusing; one person can run while another cannot walk. That confusion ripples out from those diagnosed with MS to family, extended family, and friends.

Can numbers clarify? God only knows! Yet they can identify the range from independence to dependence.
Graphs such as the above, provided by Biogen (manufacturer of Avonex and Tysabri) even over-simplify score levels with images. Hopefully anyone can ‘see’ and make the interpretative leap as to what each level may mean for the person diagnosed, how you can support and best be involved.

… and for ‘inquiring minds’ since I did open the door in the first paragraph – Patti in addition to an EDSS >8 is a Virgo and I’m a Sagittarius. J   

Caregivingly Yours, Patrick Leer 

4 comments:

  1. I'm a Virgo, I mean a 6.5. There's another scale I saw where there's more explanation about your abilities or what you're able to do at each level. I still didn't think it showed the whole picture. (Maybe I'll design my own.) Anyway, that one went up to a 10 (dead!) Seriously?
    Peace,
    Muff

    ReplyDelete
  2. Great minds think alike :) I debated creating a scale but Big Pharma has far more money and time to spend on design and artists. ... simplify, simplify.

    Caregivingly Yours, Patrick

    ReplyDelete
  3. I hadn't seen that scale before, I know like you said numbers don't tell the whole story, it is sad we get labeled like that in so many things, MS included. Interesting too that there is an apps for it, I guess there will be an apps for everything in the days/months/years to come. Scary to be going down the scale to 10.0, didn't like that outcome at all.

    hey I'm a Sagittarius too, married to a Gemini :)

    I guess there will always be scales like this, people have to define some way to measure what often cannot or should not be measured

    betty

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