In Canada 1 in 12 Canadians has
a rare disorder. That equates to 3
million Canadians and their families
that will face a debilitating
disease that will severely impact
their lives. In 2006 I was added
to that list of families and life as
I knew it was instantly changed.
I was diagnosed with CRPS
(Complex Regional Pain Syndrome)
a rare chronic pain condition
causing severe chronic pain.
Nothing could prepare me or the
rest of my family for what my
journey as a “rare” patient was
going to be like.
“All of a sudden it
was as if I was
standing alone on a
desert island with no
20—iPain Living Magazine
help having to try
and help myself”
A person diagnosed with rare
disease here in Canada faces the
same problems not unlike those
that others from around the
world are dealing with. These
include things like misdiagnosis,
unnecessary surgeries, social isolation,
financial crisis, and lack
of treatment. These might seem
like typical issues that one might
face but when you’re dealing
with a “rare” condition the impact
that they may have is that
much more severe.
Here in Saskatchewan accessing
the few resources that we do
have isn’t easy. So patients are
often forced to leave the province
and seek help elsewhere in
their search for a diagnosis. Even
though a person may be able to
obtain a diagnosis, it doesn’t necessarily
mean that they will have
a treatment plan to go along with
it. Often an individual is left to
navigate everything on their
own. There is very little support
for people with rare disease and
often this can leave a person feeling
isolated, lonely, and in despair.
“Only 60% of
treatments for rare
disorders make it
into Canada and
most get approved
up to six years later