Nothing Is By Chance

So...back in early December, I broke a tooth. In less than 24 hours, I had an infection. I happened to be out at UBC the next day for a CIRCLES blood draw and an advisory meeting, so while I was there, I popped into Urgent Care to get some help. (Which in this case was antibiotics.)

Any time I interact with health care professionals, I tend to have to give them a crash course in NMO because 99% of them have never even heard of it. In this case, it was important because I am immunosuppressed, so getting an infection was a big deal. The folks at urgent care were super nice and I was a bit stunned that in less than 10 minutes from the time I walked in the door, I was being seen.  I was in and out in less than half an hour. That never happens!

Landon, the nurse who was looking after me was really interested in learning about NMO when it came up as I was giving my medical information. I love sharing information when someone is open to learning from their patients. You know you're in good hands when your health care providers listen to you and treat you as a partner in your care. As a patient, that level of respect is deeply appreciated. We had a good talk about NMO and I gave him my card so he could connect to NMODiaries and the Guthy-Jackson Foundation.

In mid-January, I received an email from Landon out of the blue. It turns out, he does a medical podcast about ER nursing called NursEM, which has subscribers worldwide. He next podcast was going to be on MS and he felt that it was important to talk about NMO since people with NMO are often mis-diagnosed with MS. Because NMO is so rare, he realized that it was likely someone would know his patient was me, so for confidentiality reasons, he wanted to ask my permission to talk about our paths crossing. I knew his podcast would help spread awareness for NMO, so of course I said yes.

Last night, the podcast went live. It's available in both English and French and you can download it for free here. It's episode #14 MS/NMO. He and his co-host begin by talking about MS being Canada's disease and about some research Dr. Traboulsee at UBC is doing. Landon talks about NMO around the 18 minute mark, but it's worth listening to the whole podcast. 

If you'd like to learn a bit more about Landon, you can read about him here. I just discovered he's a Queen Elizabeth II Diamond Jubilee medal recipient too! Small world!

You just never know whose path you are going to cross! I am grateful to have met Landon and that he chose to take what he learned from our meeting and share it with a wider audience. Someone listening to his podcast could use that information to help an NMO patient in an ER room somewhere, someday. Awareness is everything and allies are priceless.

Nominated!

I keep forgetting to post about being nominated for a Health Activist Hero award. I was nominated by Lisa of Damsel in a Dress fame. (Thank you Lisa! I am humbled.)

If you would like to endorse (vote for) me, I would love that-if I win, Wego Health will make a donation to the charity of my choice. Voting is open till the end of December. Just so you know, you can only vote once, so it's pretty quick and painless. To vote for me, click here. 

A heartfelt thank you to the 48 people who have voted for me so far. You guys ROCK!!

Additionally, the blog team of Someonelikeme.ca, the Canadian MS Society's blog for younger people who either have have Ms or have a loved one affected by MS has also been nominated for a Best Team Award. I've been writing for Someonelikeme.ca since the website's inception almost 4 years ago. If you'd like to take a moment to endorse our team, I'd really appreciate that too. 

You can vote here.

Please feel free to share this post with your networks-the more votes we get, the better the chance that we'll win and the MS Society of Canada and the Guthy-Jackson Foundation will receive donations! 

Join the Fight!

I have {finally} set up a fundraising page for the 5 km NMO Walk/Run taking place in the Tri-Cities on June 1st. I promise you that there is no donation too small to make a difference. 

I am scheduled for 3 days of IV steroids infusions next week. My battle with this disease happens every second of every single day and I am fighting it on every level I can-through writing, art, public speaking, advocacy, volunteering for research and fundraising. What makes it do-able is the incredible support system I have. 

If you can, please visit my page to make a secure online donation using your credit card. You can do that here. My deepest thanks to everyone who has already made a donation. It means everything to me.

To learn more about Neuromyelitis Optica (NMO), please visit the Guthy-Jackson Charitable Foundation.

Rare Disease Day 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.

NMO Day 2013, Vancouver

Top: NMO Day Venue, the beautiful VIFF Vancity Theatre

Bottom: (L-R) Nancy Reimer, NMO Advocate, NMO Walk/Run Organizer

Dr. Katja Van Herle, Guthy-Jackson Foundation

Dr. Tony Traboulsee, Neurologist, Researcher, NMO Specialist UBC

Lelainia Lloyd, Advocate, Health Mentor

Last Thursday was NMO Patient Information Day here in Vancouver. As I've mentioned before, I was presenting about the Health Mentors Program. It went very well. There was alot of positive feedback and I was able to hand out pamphlets to people who were interested in applying to be Health Mentors next year. I actually ran out of pamphlets!

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. 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. I would love 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! That's my hand on top and the rest belong to members of my support group. I shot this about a year and a half ago. So far it's been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

Yesterday I had to head out to UBC for a neuro appointment. When I arrived, one of the researchers was at the front desk and immediately greeted me and told me what a great job I did on my presentation. When the neuro fellow came to get me from the waiting room, she told me she'd heard great things about my presentation. I wasn't expecting this, but it made me feel really good to know I'd had an impact. The feedback has been very positive. I really love doing advocacy and awareness work.

This is Annie, one of the NMO researchers at UBC. Without her hard work, NMO Day would not be possible. She is a dynamo at pulling everything together and such a kind and lovely person. We adore her!

So...that's the scoop from the 2nd annual NMO Patient Day here in Vancouver. I'm so grateful to live in a city where connecting to others living with this rare disease is possible. Together we are stronger!

Making History

So today was the NMO 5 km walk/run. It was the first dedicated NMO event ever held and when I say that, I mean worldwide! We were making history in British Columbia this morning! These were our great t-shirts and I can tell you that it was a sea of green in the park today!

The event raised $20,000 the last I heard, but there were some late registrations and a number of on site sales-t-shirts, awareness bling and lunches as well as donations, so the final tally has yet to come in.

I was volunteering at the registration/check-in table, so I got to greet everyone who was picking up their race packages. Lots of smiling face, despite the early start. You can see one of our generous corporate sponsors, MV-1 Canada's info which I personally put it into the hands of our participants. So happy to help promote such a great company that has been so kind to me & the NMO community!

Very happy to have Annie Kuan (left) and Dr. Tony Traboulsee (right) joining us. Annie is the one who helps keep the NMO community connected. She is the 

Research Coordinator for the NMO Clinic & Research Program. Dr. T is a neurologist and NMO specialist at UBC. Both super nice people who are working hard to make a difference in the lives of NMO patients.

I was also so pleased to have Fin Donnelly, our MP and Selina Robinson, member of our city council join us as well. It was so great they could take time out of their busy schedules to come join us and show their support.

Here's the sea of green, as seen from the stage. It was a beautiful sight.

We had an opening ceremony. Nancy Reimer, whose 9 year old son Riley has NMO organised the event, so she spoke first about their journey from Riley's diagnosis at 7 years old to today's event. After that, I spoke very briefly about my experience and then about the importance of awareness, advocacy and the work NMO researchers and scientist are doing. Follow that, another NMO patient, Valerie Shalay (hope I got her name right!) spoke about coming to terms with her diagnosis and then Dr. T spoke about his work with NMO patients and the need for the government to cover NMO drugs.

Riley and another little girl (sorry, I don't remember her name!) the two youngest NMO patients cut the ribbon at the start line...

...and then the runners and walkers were off!

While everyone was off on the course, volunteers organized the door prizes. Our sponsors were very generous and there were lots of great goodies to be had!

There was a cheering section at the finish line to encourage everyone to finish strong and there was lots of cake and fruit for everyone afterwards.

It was a really wonderful event. Everything ran smoothly, everyone had a great time and I got to meet some really interesting people. Nancy did a fantastic job organizing this event and I think she can be really, really proud of the work she's done.

As I was leaving, I came across this:

I am not entirely sure if this was for real, but it made me laugh. I am wondering if Dr. T is aware that for $2500 he's expected to sell hot dogs out of the back of a vintage car, while wearing a speedo?!? Well I guess that's one way to fund a cure!

An Important Conversation

Join the first #AKchats on Twitter,Fighting for Care.

When you have multiple sclerosis, cerebral palsy or another chronic illness that accelerates the aging process, where do you turn for long-term care? Hospitals and nursing homes seem to be the only options. Anna-Karina Tabuñar (@AKTabunar) explores this important topic featuring special guest, 

Lelainia Lloyd (@tatterededge).

 Join the conversation on Twitter using #AKchats on 

Monday, May 13th at 9 a.m. PST. (12 p.m. EST)

Learn more by visiting Anna-Karina's website.

 *****

I'm so honoured to be invited to be a part of this.
I hope you'll come join this important conversation.

5 KM Walk/Run for NMO

So I have some great news to share! 

The first ever Canadian 5 km walk/run for NMO (Neuromyeltis Optica) will be taking place on Sunday May 26th, 2013 at Rocky Point in Port Moody, BC.

This event is possible, thanks to the hard work of Nancy Reimer, who is a mum on a mission: her 8 year old son Riley has NMO. 

The walk/run will help raise both awareness and crucial research dollars.

More information about the event can be found here.

If you'd like to register, you can do so here. There's an early bird rate until April 24th, so be sure and sign up today! 101 participants have already registered which is fantastic!

If you are unable to attend but would still like to help, you can do so by making a donation to my personal page here. (Where you can also read a bit about my NMO journey.) Every little bit helps and I thank you from the bottom of my heart. 

On the day of the run/walk, I will be volunteering and saying a few brief words at the welcoming ceremony. I hope if you're local, you'll come join us.

"Without awareness, there is no funding.

Without funding, there is no research.

Without research, there is no cure.

Without a cure, there is no hope.

We need to work together to make sure there is always hope."

Please feel free to share the link and/or this post!