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

Advertisements