Tuesday, February 25, 2014
What is a rare disease?
A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Close to 3 million Canadians have a rare disease. In North America, NMO affects 4 in 100,000 people. Currently Canada has 2000 NMO patients. 200 of those NMO patients reside in British Columbia.
How does having a rare disease affect patients?
Financial and administrative barriers deter physicians, researchers and scientists from submitting funding requests for small patient markets. Standardized drug trials require a certain number of subjects for a specified length of time. Due to the small patient market of a rare disease population, there are limited drug discovery initiatives funded by pharmaceutical companies. Therapies may be available but are not distributed or developed further due to the limited demand.
This means that the drugs available to a patient are severely limited and often the drugs used to treat their diseases are used “off label”, meaning they were developed for a completely different illness. This can lead to a lack of drug coverage by the Canadian government.
For example, the current drug therapies approved in BC for NMO are two immunosuppressant drugs in pill form, which were developed as anti-rejection drugs for kidney transplant patients. A third drug which is administered as an infusion is being used in the US, but does not currently have coverage in Canada. If the two immunosuppressant drugs in pill form fail for any reason, there is no back up drug for an NMO patient to turn to. My NMO specialist in BC is working hard to change this by lobbying the provincial government for coverage.
Another big issue for people living with a rare disease is the lack of scientific knowledge and quality information on the disease, which can lead to a delay in diagnosis and/or inappropriate or a lack of care. Initial mis-diagnosis is common.
Drawing from my own experience, I was initially mis-diagnosed with MS, which is common for NMO patients. When I visit a hospital for any reason, I can guarantee that every single medical practitioner I come into contact with will need to be educated about what NMO is and how it affects me. I’ve given what I refer to as “A Crash Course in NMO 101” to up to 5 health care providers in a single visit. When you are sick, it can be exhausting having to do this.
So what can we do to support those living with a rare disease?
The most difficult part of living with a rare disease is feeling like you are alone. Knowing that others care is so important! You can help raise awareness-it’s really easy:
1. Visit Rare Disease Day to download a social media banner for your Facebook page or a profile picture for your Twitter. Rare Disease Day is on Friday, February 28th, but you can do this any time this week.
2. Share on your Facebook status update or Twitter post that you are participating in Rare Disease Day and invite your friends, family and followers to do the same!
3. Share a link back to this post on your blog, twitter or Facebook page.
4. Comment below to tell me you're participating and send me a link-I'd LOVE to see and to thank you!
For more information on NMO, please visit: The Guthy-Jackson Charitable Foundation.
Monday, February 24, 2014
I have been invited to speak to the BC Chapter of the Canadian Association of Neuroscience Nurses (CANN) at the end of April about my experience with Neuromyelitis Optica (NMO). I am really excited to have the opportunity to share my story with health care provides who are working in the neurosciences field and help raise awareness. I will be speaking for about half an hour and then there will be a Q&A afterwards. I look forward to the conversations that will happen there.
In other news, I also got word that a small piece I wrote about a piece of clothing that has deep sentimental value to me is going to be included in Vancouver Artist & writer, Leanne Prain's new book, Strange Material: Storytelling Through Textiles will be released this autumn by Arsenal Pulp Press.
What's it about? Here's the scoop:
What's it about? Here's the scoop:
"Strange Material: Storytelling Through Textiles will explore the relationships between handmade textiles and stories. Through the text, the act of weaving a tale or dropping a thread will take on new meaning for those who may have previously only seen textiles as functional objects. The book will encourage storytelling to leap off the page and into the mediums of batik, stitching, dyeing, fabric painting, knitting, crochet or weaving. The artists that will be featured in the book create narratives with a needle, instead of a pen, dye rather than ink, weave i place of paper. Themed chapters will include fiction, poetry, wearable stories, manifestos, memoir, pictorial stories and humour."
I wrote the small piece in response to Leanne's call back in the summer and then promptly forgot all about it! That's the fun of long lead times with books-you submit work months, if not years in advance and by the time you get the news that your work has made the cut, it feels like a surprise out of the blue. I love those kinds of surprises! Leanne said there will be a book launch party in the fall and to expect an invitation. I'm in-it should be lots of fun!
Speaking of surprises out of the blue, I also received a "you're invited" email from the local curling club that I volunteered with for the 2014 BC Wheelchair Curling Championships last month. They are hosting a thank you dinner this Friday for those of us who volunteered to help host the event. It's super nice of them and it will be fun to talk about the incredible Olympic curling that team Canada played!
Wednesday, February 19, 2014
So yesterday I did something I've never done before: I let my name stand for nomination to the board of directors of Won With One! I was elected as a vice president last night! See?
My friend Jan sent me an email asking if I would be willing to come on board. It was totally unexpected, but she does such important work and I felt like I had the opportunity to make a difference, so I said "YES!". I may not be a Para athlete myself, but I have a long history of supporting big sporting events and advocating for awareness, accessibility and inclusion. As someone who is living with a life-altering illness that can result in paralysis and blindness, I can totally understand how important it is for someone who lives with a disability to reclaim their physicality through sport.
When it comes to sport, people with disabilities do not lack ability-what they lack is opportunity. Won With One offers the opportunity to compete in ParaTriathalon by offering resources such as equipment and guides and most importantly, a supportive community. One of the most poignant stories of One With One's impact on its athletes goes like this:
"Remember how old you were when you rode a bike for the first time?
So does Shelly Ann. She was 50."
That is the kind of difference Won With One is making. That is why I let my name stand for election to the board of directors. I am honoured to be given the opportunity to join forces with this amazing organization.
Get connected and learn more about Won With One here:
Tuesday, February 11, 2014
Just when you thought my Olympic stories were done...
Friday, CBC invited 2010 Blue Jackets (the nickname lovingly given to Vancouver Olympic & Paralympic volunteers) to come by the station for the Early Edition radio show. They were very kind to us and gave us all sorts of swag, in the form of pins (with the exception of the bear shown above-I won that one from Petro Canada, online.) and treats.
Here's a selfie I took in their official Sochi Olympic radio broadcasting booth.
As you can see, the event was well attended. A small handful of us arrived at 5:30 am for the start of the braodcast. We were the keeners! It wasn't a problem for me, being an early riser. I was able to catch a ride with my husband, which was memorable because just as he was letting me off, he thought he'd turned backwards up a one-way in the downtown core. (He didn't-some idiot from the City of Vancouver had parked his pick up in the middle of the oncoming lane. It gave of both of us a moment of panic until I realized there was a yellow line down the middle of the street and we were on the correct side of it.)
I did a little on air interview about my favourite memory from the 2010 Olympics.
VANOC CEO John Furlong stopped by for an interview.
So did Canadian Gold Medalist in Snowboard, Ross Rebagliati.
He brought along his bulldog Logan, who was very sweet.
Photo op! (At this point, I'd changed out of my Blue Jacket and into my down parka because it was freezing!)
Sunday, the Blue Jackets were invited to Creekside Community Center in the Athletes' Village to celebrate the Games.
While we were waiting for things to get started, this reporter from CBC's French TV asked me to do an interview. It lasted about 5 minutes.
There was a parade, singing of the national anthem and then lots of entertainment, booths and food trucks. A whole bunch of reporters from tv and the papers came out. This photo was of the 5:30 am crew from Friday at CBC Radio and someone photobombing us in the background.
Incidentally, notice the RCMP member's medal? I have one just like it at home. I should have worn mine!
Canadian Gold Medalist Skier Ashleigh McIvor was there, letting Blue Jackets try on her medal and get a photo and she was also signing postcards as a thank you for our service in 2010. She was incredibly patient and generous with everyone. A real class act!
Just before I was leaving, I did a second TV interview with Brian Coxford from Global BC.
Here's a shot of me on French CBC. Having been on CBC TV and CBC Radio over the weekend, I feel like I've been validated as a true Canadian. *laughs*
One very wonderful thing that I wanted to share with you before I sign off, is that as of this morning, my friend Andrea Bundon (Or should I say Doctor Andrea!) has officially been named to Canada's Paralympic Team, as a guide for Cross Country Ski athlete, Margarita Gorbounova. I am so incredibly happy and excited for them to compete and I'll be cheering so loud, I am sure they will hear me all the way from Canada!
In the meantime, you really should go check out Andrea's blog about Paralympic Sport, AthletesFirst. Seriously!
In the meantime, you really should go check out Andrea's blog about Paralympic Sport, AthletesFirst. Seriously!
Thursday, January 30, 2014
Just a quick post to help get the word out about a few events happening around the Sochi Olympics:
The first two are for Blue Jackets-time to suit up & celebrate!
I hope you’re doing well and excited about the upcoming Olympics. I work for CBC Radio and am currently organizing a big opening ceremonies show for our morning program, “The Early Edition”, on Friday, February 7th.
I’m writing to invite blue jacket volunteers to come down to our show. It will be held in and around our new CBC Canada House, which is our Olympics studio, between 6-9 a.m. at Georgia and Hamilton in downtown Vancouver. There will be free coffee and the ceremonies will be on our big screen outside the CBC studios.
If you’re interested in coming, we would love to have you out. If you could possibly pass this along to any other blue jacket volunteers, I would sincerely appreciate that as well.
Producer,CBC Radio One
Winter Games Legacy Celebration for Blue Jacket Volunteers
Sunday, 9 February 2014 from 12:30pm until 2:30pm
Creekside Community Centre, 1 Athletes Way, Vancouver
Celebrate and commemorate the Vancouver 2010 Olympic & Paralympic Winter Games at Creekside Centre in the former Olympic & Paralympic Athletes Village! This is an all ages event that will feature big screen play back of Vancouver 2010 Olympic & Paralympic Events, games and craft stations for children and much more!
All former volunteers at the Vancouver 2010 Olympic Winter Games can register to attend this free event and participate in a parade, pin trading, interactive games, and enjoy live entertainment.
Registration is required for Blue Jacket Volunteers (ages 19+) and have your accreditation pass number ready when registering, and present on the day of the event. To register, please call the Creekside Community Recreation Centre at 604–257–3050 ext 2.
BC Sports Hall Of Fame & Museum
Red Mitten Weekend
Feb. 8, 9 &10th 10 am-5pm
Gate A, BC Place Stadium
Hey kids, do you remember where your RED MITTENS are? Be sure to find them and wear them to the BC Sports Hall of Fame over Family Day Weekend for FREE admission!
We've got lots of activities to choose from Family Day weekend February 8,9, & 10th including:
- the chance to slam some ping pongs against your opponent on the table used in the 2010 Athletes’ Village
- a unique collection of figure skating paintings of Tessa Virtue and Scott Moir, Joannie Rochette, and Johnny Weir
- breaking a sweat in our games room where you can rock-climb, run, and try your hockey shootout skills!
- watching highlights of the 2010 Games on our big screen and MUCH MORE!
Everyone welcome! Look forward to seeing you over the weekend!
Wednesday, January 29, 2014
Best selfie ever!
This past weekend, the BC Wheelchair Championships took place in my community. When I heard we were going to be hosting, I called our local club and offered to volunteer. As it turns out, I was the only outsider (non-curler, non-club member) to be involved. That said, the Coquitlam Curling Club members were incredibly friendly and easy to work with.
I was really grateful for the knowledge I'd gained serving two terms on the city's Universal Access-Ability Advisory Committee around accessibility and inclusion-it served me well for this event and was something valuable I brought to the table.
Friday night, there was a banquet for the athletes, sponsors and organizing committee members. The guest speaker was Richard Peter, a 5 time Paralympian and gold medalist in Wheelchair Basketball at the London 2012 Paralympics. We shared a table at dinner and he really is a lovely man.
Richard was kind enough to pass his medal around so everyone could enjoy it. It really is a thing of beauty.
While the athletes were curling over the weekend, I was entrusted with looking after Rumour, the service dog. She is so sweet. I have a very soft spot for Labs, so I was more than happy to have her keep me company.
Rumour's athlete was playing on team MacDonald and they made it to the finals, only to be defeated by team Neighbours. Team Neighbour's skip is Paralympian Darrell Neighbour. Team Neighbour will be going to the Canadian Championships in Montreal in April. I wish them the best of luck!
This was the first time the new Poirier Sports & Recreation Centre has hosted a wheelchair event and I think it went exceedingly well. It's great to see our community hosting accessible sports events like this. I hope we see more in the future!