Showing posts with label someonelikeme. Show all posts
Showing posts with label someonelikeme. Show all posts

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.

Monday, August 22, 2011

Exciting News!!

A couple weeks ago, I entered a contest online to win registration ($150) in a local event called  The Mitsubishi City Chase. Urban Rec was giving away registration for 3 teams to enter the chase. This is something my son and I had talked about doing in 2009, but it was not to be-I spent the spring and summer of 2009 going through chemo to try and get my MS to go into remission.

 I entered the draw by explaining why I wanted to participate. The draw came and went and unfortunately, I didn't win. I'd been following City Chase on Twitter and we'd been talking about the event. I told them that I'd entered and that I was hoping to win because not only was it something I really wanted to do with my son for the good memories we'd create and the chance to do something like this before I am no longer physically able, but also because if I won, I would be writing it about.

My plan was to share my experience in the chase on the MS Society's website for young people who have MS or have a loved one affected by MS, which I write for. Participating in this amazing event would give me a wonderful opportunity to talk about resilience and not letting MS keep you from going after your dreams. Anyone who knows me knows that if anything, my diagnosis 3 years ago has only made me more determined to work harder and faster to cross things off my life list and I've been crossing off some pretty big stuff since then!

Anyway, as I said, I did not win the draw. I was disappointed, but ultimately okay with it, because you can't win 'em all. I set it aside while hoping to be able to catch some local coverage about how it all turned out on the 27th.

And then something happened....

This afternoon, I got an email from the good folks at City Chase. They had shared my entry and the conversation we'd had about my motives for participating with the fine people at Urban Rec and GUESS WHAT?!?! Urban Rec decided that I (we-my son and I!) should be in the chase too! They have gifted us a registration!!


I was completely stunned-I never saw that coming and it's totally made my week, quite possibly, my summer. I am constantly in awe of how the magic of my life works. I love it when life throws the doors wide open!

So I want to say a HUGE THANK YOU to Urban Rec for their incredible generosity and to City Chase as well for being so sweet. I am deeply grateful. I promise that our team, BRAVE & CRAZY will leave it all out on the field of play. We will think hard, play hard and most importantly, laugh hard and at the end of it all, we'll come in smiling and with a good tale to tell. See you at the finish line!

Wednesday, May 25, 2011

World MS Day 2011

Copyright Lelainia Lloyd/Tattered Edge 2011
(Created in honour of World MS Day.)

Today, May 25th, 2011 is
World MS (Multiple Sclerosis) Day.  

I have some news I wanted to share with you. Today the Canadian MS Society is launching a new website targeting the needs of young people from the ages of 15-25 who have been diagnosed themselves or have had a loved one diagnosed with Multiple Sclerosis. will include blogs, an online discussion forum and inspirational stories shared by a number of writers from across Canada who know what it's like to live with this disease. I am very pleased to share that I will be writing for the website on behalf of British Columbia. I'm honoured to have the opportunity to be involved in this important initiative.

The site is now up and running and content will continue to be added in the coming days. I've submitted my bio and my first blog post so those should be available shortly. If you're an adult who knows a young person affected by MS, I'd appreciate it if you'd help spread the word.