Today is International Rare Disease Day, the fifth observance since I was diagnosed in 2009 with Erdheim-Chester Disease.
I’m sad to say not a lot has changed in Canada regarding the availability and funding of treatment of rare illnesses.
Several years later and I still find myself embroiled on a regular basis in arduous applications (along with a fair amount of begging and pleading) for funding. The battles for me are no longer about experimental treatments in hopes of slowing down the progression of this disease, but instead pleas for pain relief, mobility aids and oxygen. Items to make a poor quality of life just a smidgen more tolerable.
Might things have turned out differently if access to treatments and medications had been more readily available? Would I have given up on treatments as I did after the high dose radiation sessions in the fall? I just didn’t (and don’t) have the strength anymore to keep on fighting. Perhaps I’ll be judged as giving up, as weak – but truly, until you’ve walked in these shoes… (and I pray that you never need to).
Click here if you wish to listen to the episode of CBC Radio’s “The Current” in which I was interviewed almost two years ago on the subject of rare illness in Canada. I won’t be listening, I’m afraid to hear the hope that I had in my voice at that time for myself, the fellow ECD patient interviewed (who sadly passed not long after, his family remains in my thoughts and prayers) and other rare illness patients in this country.
The system has exhausted me. Fighting this illness and all the challenges surrounding it has annihilated me. I’ve raised my white flag, and it’s awfully hard to keep waving it.
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'weak'? anyone who knows you, sandy would NEVER say that about you.
ReplyDeleteyou are literally the strongest and bravest person I personally have ever met.
keep strong and keep smiling xoxo