Thursday, February 28, 2013

Rare Disease Day 2013

Today is Rare Disease Day, world wide. It's a day to help raise awareness for disease that are life threatening or chronically debilitating, have a low prevalence and are usually incurable. In late November of 2012, I discovered I didn't actually have Multiple Sclerosis, but a rare disease called Neuromyelitis Optica. (Formerly known as Devic's Disease.)  NMO affects 5 in 200,000 people, making me a rare bird

Finding out that the MS diagnosis I'd lived with for 5 years, was incorrect was a relief. The relief came from finally making sense of why with all the aggressive treatment I'd had, I could not get into remission. It was also very scary. NMO is much more serious than MS in that the damage happens rapidly during an attack, can result in blindness or paralysis and has the potential to be fatal. I don't dwell on this though-given that I've lived with it for an incredibly long time not knowing and essentially not having the any treatment (the treatments for MS can actually make NMO worse) I feel confidant that I'm not going to keel over any time soon! It helps to know what I am dealing with so I can take the right drugs and treatments to hopefully mitigate further damage, but it doesn't change how I'm living my life. I am still out there pursuing my dreams, just like I've always have. You can't keep an Aries girl down!

I have had the great good fortune to be involved with the education of future health care providers through two programs I volunteer with as a health mentor at UBC. I started working with medical students 4 years ago and that work will continue. MS will always be a part of my story, but now I will also be helping to educating them about NMO. As I've learned through my own experience, awareness is crucial in the medical community. 

A week or so ago, The Guthy-Jackson Foundation, released "How Do We See In the Dark", narrated by Christine Ha, winner of Master Chef 2012, who also has NMO. It's a wonderfully uplifting video talking about the work that is being funded by the foundation world-wide in an effort to unravel the mystery of NMO in order to work towards better treatments and ultimately a cure.

If you've clicked any of the links I've provided in this post, thank you for taking a moment out of your busy day to learn more about NMO. I'd love it if you'd link back to my post, tweet it or like and share it on FB and help me spread the word.

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