Awareness

May is a big month for awareness; ALS awareness, lupus awareness, myositis awareness…
I understand the need for awareness. Awareness leads to donations to research to cure, ideally.
And no one thing is deserving of awareness more than any other. I have friends who cope with chronic pain, with inclusion body myositis, with depression, with rheumatoid arthritis, and so on.

Awareness isn’t a contest to see who has the “worst” condition, or who deserves the most attention; we’re not martyrs bravely carrying the cross of our afflictions, we’re ordinary people making the best of extraordinary circumstances. My suffering does not diminish theirs.

Awareness is, however, generally more acute for two reasons: when someone you know gets that diagnosis, the one you may never have heard of before, the one you thought the odds were against, the one you never saw coming; secondly, the one that advertises best. And the squeaky wheel gets the grease, as they say. So, if you don’t know someone who’s living with a lesser-known disease already, why not grease the wheels of a disease you’re not as familiar with?

In the meantime, some ALS facts of which you may not be aware:

  • The BC ALS society reports a 21% increase in people with ALS since 2013. Huge jump. Why?
  • According to ALS Worldwide, there are over 30 mutated genes linked to ALS. This is not a disease with single cause, this is a syndrome.
  • Tufts Centre for the Study of Drug Development (2016) estimates the cost at bringing a new pharmaceutical drug to market to 2.56 BILLION dollars, yes, with a “B”.
    That explains why rare disorders/diseases have so few treatments available, there’s just no return on investment. And that’s a whole other can of worms to be opened another day.

 

Because of ALS, I am aware of how I will likely die.

But I am also aware that despite it all, I am very lucky indeed. I am surrounded by a wonderful support network, and have all of my needs met.

I am aware that right now, I am alive, and that is plenty to be thankful for. ❤

“Let us not look back in anger, nor forward in fear, but around in awareness”
–James Thurber

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4 thoughts on “Awareness

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  1. You did your job well my friend. I did not know that ALS had grown by dx recently. I do know that our Myositis groups are growing by leaps and bounds. WHY? What are we missing? What are we doing?

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    1. Oh, MJ, big sigh. I don’t know what’s up with the increase, but when I saw my respirologist last he mentioned he was seeing not only more cases, but younger age onset. My purely unscientific thoughts are that ALS, and Myositis’ and other autoimmune disorders are on the upswing for a couple of reasons. First, it has to be something environmental, right? And second, possibly there are better diagnostic tools available, so more confirmed dx?
      Thank you for the love, as always ❤

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  2. You are right, Liz! There is more diagnosed all the time. Maybe ti was always there and maybe we just did not identify it. The people who support us are more important than any drugs, especially if you have a lesser known illness that has not been researched. You remain an inspiration to all of us!

    Liked by 1 person

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