Posts Tagged ‘NMO’

Trip to Toronto!

Written by on February 2nd, 2016 –
Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

On January 18th, I flew off to Toronto to serve my 2nd term as a Community Representative for the Canadian MS Society. This year, I was assigned to the Clinical and Population Health (CPH) Committee, which deals with research related to mental health/quality of life research in relation to MS patients. It was really encouraging to know that researchers and clinicians are invested in finding ways of treating the whole patient and helping to address the unique mental and emotional challenges MS patients face living with this life-altering disease. (more…)

4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 –

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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 

 

A Medical Meme!

Written by on October 20th, 2015 – 2 Comments

LelainiaLloyd

1. The illness I live with is: Neuromyelitis Optica (NMO)

2. I was diagnosed with it in the year: 2012 (previously mis-diagnosed with MS in 2007)

3. But I had symptoms since: I was 12 years old.

4. The biggest adjustment I’ve had to make is: Dealing with fatigue, a lack of sensation in my hands & bouts of severe pain at the base of my skull.

5. Most people assume: There’s nothing wrong with me. Apparently, I look fine, no matter how much pain I am in.

6. The hardest part about mornings are: Waking up feeling just as tired as when I went to bed.

7. My favorite medical TV show is: M*A*S*H is a staple in my house. I never get tired of it. I also enjoyed HOUSE, MD & Nurse Jackie. (more…)

Catching Up!

Written by on April 28th, 2015 –

Page 17, MS Pathways March/April 2015

March was an insanely busy month. Just before I left for LA for NMO Patient Day, my husband and I faced an unexpected move. For added fun, I also had an accident that resulted in a fractured rib. It was not ideal to have to be purging and packing up an entire house in order to downsize and move, but somehow I did it. I am eternally grateful to my son and my husband’s co-workers (big burley construction guys) who came and did all the heavy lifting. We are now settled in at our new home, a condo on a beautiful greenbelt and it even has a pool. We LOVE our new home.

Patient Day in LA was a wonderful experience. There were NMO patients there from all over the world as well as NMO researchers and clinicians. I was invited to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program, as a Community Representative for the MS Society of Canada and as a blogger from Someone Like Me. While I wasn’t at my best, (my fractured rib was causing me a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

It’s amazing to think that the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, NMO patients are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

Awhile back I wrote a short article about blogging about MS and NMO for MS Pathways, which is a UK MS organization publication. It was recently published and was a great opportunity to raise awareness for NMO, Someonelikeme.ca and NMODiaries.com . I’ve included a screen shot (above) of the e-publication. (I’m the one circled in red.) If you are interested in a hard copy, they can be ordered here: www.ms-uk.org

I have lots going on this month, which I’ll talk about in my next post. Blogging at the speed of life!

 

 

 

 

 

UBC NMO Patient Day 2014

Written by on November 25th, 2014 –

nmo dayOn Saturday, November 1st, 2015, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society.  As you can see, the day was jam packed!

The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the biorepository** has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Now, that wait is over- UBC has begun enrolling patients  in the study!

The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab*** for NMO patients. Currently, Canadian NMO patients can get compassion coverage of about $3000 towards the cost of the drug, but the remaining balance must come from the patient or via third party insurance. The cost is prohibitive for most patients. In conversation with our local NMO clinic, arrangements are being made to have this petition available online and to extend the request to include that the federal government approve coverage Canada wide.

For those of you who are interested, I did manage to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include them in the day’s events in this way.

The next NMO event coming up will be NMO Patient Day in Los Angeles on March 4th, hosted by the Guthy-Jackson Foundation. I am hoping to be able to go to learn more about what’s being done to help those of us living with this disease. If I am able to attend, I will of course report back and let you know what I learned!

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.

**Biorepositories are “libraries” where biospecimens (materials taken from the body, such as blood) are stored and made available for scientists to study for clinical or research purposes.

*** An immunosuppressive agent, given intravenously to prevent NMO attacks.

 

Visiting the Neuro-Opthomologist

Written by on October 21st, 2014 –

eyeMany of us living with Multiple Sclerosis and Neuromyelitis Optic (NMO) are likely to experience optic neuritis at some point, making it necessary for us to see a neuro-opthomologist. I thought I would take this opportunity to share what happens during a neuro-opthomology appointment.

Ophthalmology is the branch of medicine that focuses on the anatomy, physiology and diseases of the eye. Most people with visual issues see an opthomologist on a yearly basis. Generally speaking, an opthomologist is an expert in medical and surgical eye problems and will perform standard tests to evaluate the health of your eyes and if needed, prescribe glasses or contact lenses to correct your vision.

Neuro-ophthalmology is the sub-specialty of both neurology and ophthalmology focusing on visual problems that are related to the nervous system, so those of us living with MS or NMO are usually referred to a neuro-opthomologist through our clinic when we develop optic neuritis. A neuro-opthomologist’s skill set is very specific and they have a number of specialized tests allowing them to recognize even subtle changes to the optic nerve so they are better able to diagnose optic neuritis and other neurological conditions that can affect vision.

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Rare Disease Day 2014

Written by on February 24th, 2014 –

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 –

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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NMO Information Day 2013

Written by on September 10th, 2013 –

Hello Everyone! I hope you’ve been enjoying your summer!

I wanted to share with you that the UBC NMO Clinic & Research Program will be hosting a FREE public information day about Neuromyelitis Optica on Thursday, Oct 17, 2013 from 9 am-2:30 pm. The event will be held at VIFF’s Vancity Theatre, which is located at 1181 Seymour St., Vancouver, BC. Lunch will be provided. If you’re interested in attending, please register here.

Last year’s event was the first time many local NMO patients had a chance to meet others living with this rare disease. It was also a valuable opportunity for those who had been or were in the process of being tested for NMO to gain important information. If you are in the Metro Vancouver area and have questions about NMO, I strongly encourage you to come. Attending last year armed me with enough information that I was able to advocate for a consult with an NMO specialist which ultimately led to finally getting a proper diagnoses. Knowledge is power!

I also wanted to share that I will be one of the guest speakers at this year’s NMO Information Day. I’ll be presenting about my experience with the UBC Interprofessional Health Mentors Program. If you attend, please be sure to come find me and say hello!

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Skiing Is Believing: Redefining What’s Possible

Written by on April 23rd, 2013 –

On Saturday, March 16th, 2013, I spent the entire day at Whistler Olympic Park, which was home to the Olympic and Paralympic Cross Country Skiing and Biathalon events. My friend Andrea asked me to come and be the photographer for the Skiing is Believing program and I jumped at the chance. I adore Whistler and I was more than happy to support the important work she and Paralympian Courtney Knight are doing.

The Skiing Is Believing program introduces people with disability to cross country skiing. Paralympians, their coaches and team of dedicated volunteers teach people with a variety of physical and sensory disabilities, (wheelchair users, amputees, people who are blind or visually impaired, people with cerebral palsy, etc.) as well as their friends and family to ski.

 

Here’s a peek at the program in action. That was Andrea talking about the program!

 
I spent the morning capturing various aspects of the program. It was a bit of a challenge because the weather was absolutely not cooperating-we had a combination of rain, rain mixed with slushy snow and then outright snow. I’d planned ahead though and brought an umbrella, as well as a Ziploc bag, some duct tape and scissors so I could McGyver a way to keep my camera dry. It was a good thing I did because by the end of the day, pretty much everything I owned was soaked. It pays to be prepared!
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