Archive for February, 2014

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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Career vs health….

Written by on February 18th, 2014 – 2 Comments

I’ve thought a lot about this particular blog and this topic has been weighing on my mind for a while as I’ve struggled to balance life with MS and my career.  I’m hoping someone can relate?  Living and managing MS as high functioning individual is a bit like a double-edged sword.   You seem Ok to everyone else in the world, but you still have a lot to manage behind the scenes for which most people don’t account for career and life-wise.  It’s like living in the grey between a disability and MS-free life.  Sometimes it requires more energy and time than one would think or acknowledge……

I experienced MS symptoms for 10.5 months before diagnosis and from my understanding of the diagnosis process this is somewhat short.  During this period in my life, I commenced a graduate degree.  Looking back, I was experiencing a range of issues most notably extreme feeling of tiredness loomed and minor cognitive issues that I couldn’t shake.  I felt unmotivated despite knowing and deciding that this was my passion and I was going to go forth and conquer my field in science.  It feels like an excuse even now – those OK but not high marks, the inability to focus on writing, the inability to meet deadlines, the constant forgetfulness, the lack of motivation from feeling tired all the time.   The end result was several missed opportunities most notably for scholarships, what a graduate student needs to survive (all of which have made my life much harder).  Upon diagnosis, I was in survival mode and I was trying so hard to work through it all, which meant specific tasks were dropped for periods of time to accommodate MS.  I managed to succeed at physical “doing” tasks like laboratory work and field research for a period over focused writing tasks; this particular issue (lack of writing) was a deterrent to me.

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The Little Victories

Written by on February 4th, 2014 – 1 Comment

As I’ve described before, living with MS is a series of ups and downs. Days you wake up without feeling in your limbs are among your worst.

However, the day you wake up, and you realize it’s been a year since your last flare-up, and that you’re in the best mental and physical state you’ve ever been in… you feel like you’re on top of the world.

I had the pleasure of experiencing that last December, and honestly, it made me feel amazing to know I had gone a year without any issues.

However, although that was a huge victory for me, I’ve been through many victories while dealing with my MS. Some small. Some big. But nonetheless, they’ve been victories.

When my small flare-ups—y’know limbs going numb for 10-15 minutes—stopped happening because I followed my doctor’s advice of daily care and management.

For me, the day I stopped being nervous about my daily injections and it became as routine as washing my hands.

The day I realized I knew enough about my multiple sclerosis to recognize the difference between my leg falling asleep and a flare-up.

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