When we discuss transition,
which is really the movement of someone with hemophilia
from a pediatric hospital
to an adult hospital,
and we recognize that that's a big thing in their lives.
I'm nervous about getting new nurses and new doctors.
Preparing for transition is going to be something that
is going to be a little difficult at times,
but it's going to be worth it.
You're going to want to make sure you talk with your parents,
and definitely talk to them about what type of questions
you should be asking your physician,
because you might not know what's appropriate,
or taken the wrong way.
I think there is anxiety about
"What will that be like? Is it going to be the same?"
And in truth, it's not the same.
The child, who is now an adult, will be seen by themselves.
Not with the parents.
That causes some stress for families.
Getting prepared to go away to college or university,
and not having mom or dad help to keep organized
in terms of treatment and factor,
and ordering factor through your clinic,
and that can be very stressful.
Communication is absolutely essential.
Knowledge of the disorder, acceptance of the disorder,
those are the major, major keys.
It's hard to let go.
It's really hard to trust that I've taught him everything he needs to know.
And I know the doctors are there,
but they're not there with him everyday;
when he's driving down the road, when he's at university,
when he's out living his life.
I probably heard about it a couple years ago,
probably when I was 15, 16.
Definitely at that age you probably think you should transition right away,
because you're like, "Yeah, I can do it,"
"I don't need my parents, it's alright."
But really you find out, no, you can't do it on your own.
Their lifestyle is changing, they're going away to school,
or they're starting work.
They've got changes in their life
and they have to take more responsibility.
Like if you go out with friends, something stupid happens
and you haven't had your treatment in like a week.
And then you potentially end up bedridden for two weeks after that.
You're just kind've making sure that you make the smart decision,
and making sure you stay on top of treatments.
When you look at the parallels of learning to first self-infuse,
and to transition,
I think there's a few similarities.
One is that it might be your pediatric nurse
that is helping you with the process.
But eventually the goal is to increase your independence.
So once you're a self-infuser, it's kind of all on you,
and same if you're in transition, right?
And no one's going to be there to give you that needle anymore,
or be there with you on those appointments.
It's kind of all you.
Andl we're not throwing you out, and leaving you on your own,
we've got all the supports you need,
and your family is still there to support you,
but we expect you to take responsibility, you know.
When we ask you for your infusion logs,
we don't expect you to look over to your parents and say,
"Where are my logs?"
We expect you to be--to take control.
Coming out here to Halifax,
it helped because my cousin goes to this current clinic
at the Queen Elizabeth II,
so they kind of knew of me through the genealogy and stuff.
I knew what school I was going to be going into,
so I first transitioned to another adult centre,
and I was there for about six months or so,
And right after that I got into a different school,
and then made a relocation to that centre,
because everything was under one roof.
It's been an incredibly rich experience, mainly,
mainly, I'll tell you quite honestly,
because of the boys with hemophilia, what they teach you every day,
they make you realize what it's all about,
and their families are supportive.
I wouldn't trade my hemophilia because
it makes me different and special--
and you get to miss a day of school to come to the hospital,
to get a check-up.