Posts Tagged ‘awareness’

Forget Me Not As I Remember Always

Written by on May 4th, 2017 – 12 Comments

As individuals in this crazy life we live, it’s very easy for us to forget something that we’re not faced with every day, to forget something that we can’t physically see or to forget something we’re not always talking about.  It’s not our fault, we’re not selfish people,  we just have so much going on in our own lives that if something isn’t always in our face, we forget.  Remember that saying,  “You have to see it to believe it”?  Well unfortunately, any illness that involves suffering on the inside, falls under the “you have to see it to believe it” category.  This blog speaks to those with MS, to those with a mental illness (which is also quite common to develop in cases of MS) and really to anyone whose pain and struggle at times goes unnoticed or forgotten.   Lets be clear and I know my fellow fighters will agree, what you are about to read is not a complaint, a pity party nor am I throwing down the victim card for myself or anyone else.  I am touching on the very real struggle (hashtag the struggle is real lol….  I had to spell it out or it wouldn’t have the same effect) of being forgotten about.  Alright, lets break it down! Hammer time….

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Operation Med School 2016

Written by on May 31st, 2016 – No Comments

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On April 30th, I attended the Operation Med School (OMS) Conference at UBC as an Ambassador for the MS Society. The conference is a day-long event held annually for grade 12 students and undergrads who have expressed an interest in attending medical school. It gives them the opportunity to hear from and meet medical professionals to learn more. Each year, OMS chooses a charity to donate part of proceeds from the conference to. This year, they chose the Canadian MS Society.

Photo credit: Taryn Lencoe

Presenting about MS & NMO. Photo credit: Taryn Lencoe

I spent 3 days preparing a power point presentation on MS and NMO and the work the Canadian MS Society does. My friend Taryn, who works for the BC-Yukon Division, joined me at the conference for support. I spent the afternoon giving my half hour presentation four times-there were 200 students in attendance, so they were broken up into groups of 50.

I decided that it would be interesting for the students to get some hands-on experience about what it’s like to struggle with some of the symptoms of MS and NMO, so I bought along some props to help me illustrate my point. I had one volunteer from the audience come up and put a high heel shoe on their left foot and a swimming flipper on their right and then asked them to walk a straight line. The idea was to simulate what it would feel like to try and walk with a lack of balance (the high heel) and foot drop (the flipper). All of the students who volunteered were trying to hold onto the table for support and agreed that there’s no way they would be able to walk around campus for a whole day like that.

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4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 – No Comments

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The UBC NMO Clinic and Research Program will be hosting a FREE public information day about NMO on November 28, 2015.  Meet us a the Djavad Mowafaghian Centre for Brain Health, Vancouver, BC.  The event is open to patients, family members, friends, caregivers, students/trainees or anyone interested in learning more about NMO. Lunch will be provided.  Please click here to register and for more information. Please share this with anyone you think may be interested in attending.

Note: Please register each person attending and their lunch preference.

If you have any questions or prefer to register by phone, please call Michelle at (604) 827-3111.

We hope you will join us!

WHEN: Saturday, 28 November 2015 from 10:00 AM to 4:00 PM (PST) 
WHERE: Djavad Mowafaghian Centre for Brain Health – 2215 Wesbrook Mall Vancouver, BC V6T 1Z3 CA 

 

#SwimMS

Written by on August 26th, 2014 – No Comments

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(Kits Beach, Vancouver, BC, Canada)

So a few months ago, you may have read my post about Taryn Lencoe’s 12 hour solo ocean marathon swim for MS. My husband has known Taryn’s dad since he was a kid (he was my husband’s swim coach) and we had crossed paths at Vancouver Open Water Swim (VOWSA) events, but the day I interviewed Taryn to write the post was the first time we’d met.

Taryn is a beautiful woman-she is warm and funny and has a gentle, thoughtful spirit that belies the fierce competitive streak that lies beneath. When I met her, I just wanted to hug her and by the time we’d finished talking, I did just that. You can’t help but like her instantly.  (more…)

Rare Disease Day 2014

Written by on February 24th, 2014 – No Comments

What is Rare Disease Day?

Rare Disease Day, which takes place on February 28th, is a day to raise awareness about rare diseases and their impact on patients’ lives.

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. Nearly three 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.

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NMO Day 2013, Vancouver

Written by on November 19th, 2013 – No Comments

Thursday, October 17th, 2013 was NMO Patient Information Day here in Vancouver. I was invited to gave a presentation on the Health Mentors Program which went very well. There was alot of positive feedback.

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son’s battle with NMO, it brought me to tears. Little kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It’s easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF’s NMO Day in San Diego next year to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! This particular photograph has been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

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F.U.MS in Vancouver

Written by on November 1st, 2013 – No Comments

Billy Talent was here in Vancouver the last two nights, playing concerts at the Commodore. Loribelle and I were invited to come and help Aaron out by manning his F.U.MS booth. We had a great time meeting Aaron’s fans, sharing information about someonelikeme.ca and letting them know about Aaron’s new “Ask Aaron” section in the forum, as well as selling t-shirts to help raise funds for the Canadian MS Society. We did a lot of tweeting and even gave away a signed copy of their latest album to one lucky couple who saw the tweet to be the first to visit the F.U.MS booth to win it.

Last night Aaron came to meet Loribelle, her husband and I before the doors opened. It was nice to finally put a face to a name, after all this time. We had the chance to chat and I gave Aaron an NMO awareness bracelet, which he immediately put on. He very kindly asked us which of the band’s t-shirts we would like to have and then took them and had them signed by the entire band.

Loribelle and I had also never met before, so doing this volunteer gig was the first time we’ve crossed paths. It was great hanging out and getting to know her and I am sure we’ll get together the next time she’s in town.

THANK YOU Aaron for the opportunity to help out. Have a great time on the European leg of your tour!

 

The Story Of A Rare Bird

Written by on January 15th, 2013 – 12 Comments

Around this time last year, my vision got blurry like someone had smeared Vaseline over my eyes and it felt like my right eye was being pulled out of the socket. The pain was somewhat like the bad migraines I have frequently and also similar to a sinus infection. I went through four episodes of this between February and July. Despite numerous attempts to get to the bottom of why this was happening, for some reason the obvious answer kept being overlooked. Finally in late July, I happened to mention it to my MS Specialist. She immediately referred me to a neuro ophthalmologist who ran a ton of tests and informed me that my problem was optic neuritis. In light of my medical history, he wanted to run an additional test, for NMO-Neuromyelitis Optica, a disease which very closely resembles MS.

I’d had an NMO test 5 years ago when I was in the process of being diagnosed with MS and it had come back negative. While I was waiting on the results of this latest test, I learned through the MS Society that I had the opportunity to learn more about NMO by attending a patient information day out at UBC. I signed up and went.

Two weeks later, my NMO test results were in. I’d tested negative again. You would think that would be the end of it, but no. The problem is that the NMO test is not foolproof. Forty percent of people who get a negative result test as a false negative. You can test negative and still have NMO. Fortunately, thanks to attending the NMO patient information day, I was able to arrange to get a consult with an NMO expert, one of two in all of Canada.

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Why My Story Matters

Written by on December 18th, 2012 – 2 Comments

In early October, I went to the Blusson Centre, a beautiful new medical building in Vancouver that houses the UBC spinal cord injury research centre for the orientation for the UBC Interprofessional Health Mentors Program.

Way back in the spring, I went for an interview for the program and not long after that I got an email saying I’d been accepted. The way this program works is that future health care practitioners are matched with a Health Mentor who has a chronic illness and/or disability. The program offers students the opportunity for patient-centered learning through working with their mentor for a period of 16 months. This program has been accredited as part of their formal education and includes students from the medicine, nursing, dentistry, pharmacy, physical therapy, dietetics and speech and language pathology & audiology.

At the orientation, I finally got to meet the students I will be working with from now until January 2014. I have four lovely young women assigned to me. My students are studying medicine, nursing, dentistry and occupational therapy. In the current program, they’ve matched 200 students with 50 mentors. That’s amazing! My students and I had our first formal session in mid-October and I instantly felt a very positive vibe about how our group was going to mesh. I believe learning is a shared experience and I think this is going to be a great one for all of us.

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