Canadian Hemophilia Society

Youth File
Justin Smrz & Ryanne Radford
Co-chairs, National Youth Committee
2012 Youth Advocacy Workshop
In early September, 25 young adults with a bleeding disorder gathered in Toronto to attend the 2012 edition
of the National Youth Workshop. The theme this year was advocacy. The workshop started with smiles, laughs,
hugs, and some anxious faces. Those who had been to prior workshops quickly made their way to old friends
with new stories while new recruits nervously exchanged hellos. Once done with catching up, the old hands
quickly looked towards the newbies and further expanded their circle of friends.
The three-day workshop provided participants with tips on how
to better advocate for ourselves; we learned some of the best
practices in self-advocacy as well as how to overcome barriers
when advocating for our own care. Saturday morning began with
an in-depth explanation on the accessibility of blood products
presented by David Page, CHS executive director. He told us why
we need to be involved in our care, why we young leaders of
tomorrow need to be aware of the current trends relating to the
blood system, why we need to ensure continued access to a safe
and secure blood supply for future generations, as well as why we
need to ensure the maintenance of standards of care established
by the CHS and the four health care groups involved in the
treatment of people with bleeding disorders. His presentation was
great, one of the favourites of the weekend. Everyone learned
something new and we were motivated to get even more involved
with the CHS.
Next we heard some stories from some of our peers about their
emergency department (ER) experiences; a few made us cringe. To
round off our discussion about the ER, our very own nurse from
Kingston, Sherry Purcell, painted a picture of how the ER can look
on some occasions. This made us realize that even though we know
that we need medical attention as quickly as possible, the ER staff
has a lot on their plate and a little patience is required; however,
gentle and respectful persistence is not bad either.
Then followed a presentation by André Lanciault, retired
ombudsman of Sainte-Justine Hospital, on the rights, responsibilities
and empowerment of patients in the care process. Participants were
amazed to learn the influence an individual can have in the delivery
of their own care. Should a bad situation occur while visiting an ER,
remember that you have rights, you must speak up, and you are the
one who controls your life. Don’t hesitate to use the resources
available to you (ombudsman, social workers and, if available,
hospital user committee).
On Sunday morning, we had the opportunity to hear a
presentation on the history of hemophilia and the CHS. We think
we know it all? I have news for you: 80 per cent of what was
presented was unknown by the majority of the participants. Did you
know that in the 1960s some researchers thought that eating large
amounts of peanuts would reduce bleeding in hemophilia? Of course
it turned out not to be true, but still a whole generation of boys
with hemophilia was forced to consume large quantities of peanuts!
We learned so much during the weekend, needless to mention
that these sessions took place along with other fun activities and
social gatherings where we had the chance to share and learn from
one another.
We will soon begin planning our next workshop. If you have
some ideas, themes or issues you would like us to address, please let
us know. We would love to hear from you!