Interna��onal Pain Founda��on—21
than in the U.S. or
Europe”
Those affected by rare diseases
should have the same access to
care and resources as those with
more common sicknesses. As
well, there should be support for
the caregivers and families of
those affected. Yet not enough is
being done by our government to
fund the research and resources
that are needed because of the
relatively small patient population
that is affected. When speaking
to others in rare communities
who share in a lot of the same
challenges. I felt compelled to do
something about the difficulties
that I was facing, rather than sit
by and do nothing at all.
In my mind “one voice” can
make a difference. So one time,
in the middle of the night, I decided
I would write a letter to the
Premiere of Saskatchewan. I
simply shared my story about
living with a rare disease and
spoke openly towards the changes
we needed to see within our
healthcare system. I also took the
opportunity to ask him to declare
Nov.2nd as CRPS Awareness Day
in the Province of Saskatchewan.
My reasoning behind this wasn’t
only about recognizing and
bringing awareness to the disease
of which I suffer. This was also
about raising our voices and
coming together as a rare disease
community.
“The only way in my
head that we are
going to see change
is to be change”
Within a couple of months I had
a response from the Premier’s
office and a letter from him supporting
the initiative. The next
piece of the puzzle that was so
badly needed here was to find a
way to support one another. In
talking to other rare patients
throughout our province the same
topic kept coming up and that
was the need for support. So I
contacted a friend with the Rare
Disease Foundation. After much
discussion we decided that their
model for a Peer-to-Peer adult
support group would be a good
fit and that I would take the lead
on this group. This allows for
patients, caregivers, and their
families to come together in support
of one another. I have also
become an Ambassador for Out-
Run Rare whose goal is to spread
awareness for rare disease not
only across Canada but around
the world.
“A disease may be
rare but hope should
not be”
My hope through these very simple
initiatives is to bring hope to
other rare families not only in
Saskatchewan but throughout the
rest of Canada. I have no interest
in fighting when it comes to what
or what hasn’t been done to help
fight rare disease. What’s more
important to me is what we are
doing in order to move it forward.
It’s about partnerships and building
communities in order to create
that change. My passion is to
use my experience with rare for
good and in the process to help
others in their fight against rare
disease.
About the author: Ross McCreery is a
patient/ advocate creating awareness
and change for those of us who live with
chronic pain. In 2006 he was diagnosed
with the rare disease called CRPS
(Complex Regional Pain Syndrome)
that has no cure and very few treatments
for the debilitating chronic pain
of which he suffers. Ross is the founder
of CRPS Awareness Day in Saskatchewan
which is an initiative designed to
educate and raise awareness for the
disease. Ross also sits on the board of
directors for the Sask Pain Foundation
in a client/ advocate representative roll.
Along with these endeavors he works
with the Rare Disease Foundation and
has launched their first Adult Peer-to-
Peer Resource Group.