Hi everyone, my name is Sarah.
Random fact about me: I don’t have a large intestine
and that is because I have Crohn’s Disease.
I’m also an IBD advocate who runs a website
and a YouTube channel.
My name is Dan Sharp.
I’m a Crohn’s patient and an IBD advocate.
And that’s what this channel is about;
it’s about my life with Crohn’s Disease.
If you don’t know what that is
then all the more reason to subscribe
and figure out how I shit.
Can you say that?
I’m trying to show that good information
is accessible to patients.
You don’t have to be a scientist
or a doctor to go and figure out this stuff.
Yay, we’re rolling.
Now, with the internet,
patients can have a lot more information.
That’s the way the world is going.
I’ve used a phrase previously
that I borrowed from somebody
– that it takes a village to take care of IBD patients
– and to me that village includes other patients.
… Hi, we made it to Dan’s parents’ house…
(Laughing)… Sounds so stupid…
Well, we can just end it there…
Crohn’s is a type of IBD.
IBD stands for Inflammatory Bowel Disease.
Really, it’s a group of disorders or conditions
wherein the immune system
has an over-reactive response
to something in the digestive tract
and ends up causing inflammation and damage.
These aren’t like any other chronic medical conditions;
sometimes people call these the invisible diseases
because they’ll say something like,
‘well, you look fine – you might as well be okay.’
Imagine then, if you have a bowel condition
that provides you with a lack of control
or a feeling like you don’t know
what’s going to happen next.
You are unable to plan for the future
and you may not actually have people around you
who understand it enough to help you
or to support you the way you need.
I started advocacy in a weird way.
It wasn’t until three years after my first two surgeries,
but I ended up in the hospital again.
So, to fill my time
and to feel like something was happening in my day,
I just opened my computer one day
and turned on my webcam
and started talking to the camera,
and started sharing my story
and uploading that to YouTube
and then it turned into what it is today.
I think that it’s important
that the right story about IBD
gets out there to the general public
and that’s why I share what I do.
I want to just break down the stigma that all we are
is people that are running to the bathroom all the time
because that’s definitely not my life
and it’s not a lot of our lives.
The more that I uploaded videos
and I saw the response
– and patients responded to it so well –
I was like, okay, I’m doing a good thing,
this is okay, and it inspired me to talk.
My advocacy,
and something I’m really passionate about,
is helping patients be empowered with information.
I think the more that a patient knows
about their condition
the better decisions they can make about their health,
the better they can advocate for themselves
in a healthcare setting;
they know what questions to ask
– things like that.
The traditional model
of patients learning about their disease
came from a much more paternalistic relationship
with their doctors.
The doctor would tell them what they had
and what they needed to do
and the patient either would do it
or they wouldn’t, but more often than not,
they would do it.
We evolved into the appreciation
for shared decision making
and shared decision making was augmented
by the growth of the internet.
Now, at the same time we also learned
a lot more about how patients make decisions
and the value of other educational fora
including YouTube videos.
Now, whenever you open up channels of information
there’s also the challenge of facing misinformation.
Rather than be threatened by that
I think physicians and nurses
need to be open to that dialogue
and understand what’s out there.
This is ground-breaking stuff.
Okay.
Okay, go on.
I know Dan and Sarah very well.
He’s pretty much everywhere that we go.
If we go to a conference or something,
he’s most likely presenting at least once there.
I actually look up to them
and I respect what they do, greatly.
In fact, I think that they really believe,
and I completely support their role as saying
– you know what, we’re not part of
the medical establishment but we’re informed
and we want you to know
that what you’re saying isn’t right
– and what has been necessary in order for them
to do that so effectively
is for them to actually attend medical conferences,
to not be afraid of learning the science
and challenging the science.
You know, I might not be a doctor
but I’m a smart person.
I’m capable of learning a lot, so,
I put my time and energy into researching things,
making sure I get the right information.
Then I always check it before I publish it.
I have a lot of doctors on the internet
that have been so kind to me
and we’ve messaged them late at night on Twitter
and been like ‘hey, I have a question…’
And I’m not afraid to give feedback
if I think they’re misdirecting people
because it’s going to happen either way.
You might as well be doing it and working together,
than having any fear of what that means.
I always joke around about –
well if a doctor retweets it
then that means I did a good job.
If they’re saying that this was good information
then I’m like, yeah it’s good information.
I was taught by my mentor
that all the research we do
should start and end with the patient who suffers
and that may sound completely obvious
but the reality is
that in research a lot of times it’s not.
There are certain things being studied
because patients in the IBD community
are speaking up.
And so for years what was the number one topic
on the internet that wasn’t able
to be answered sufficiently in the IBD research arena…
I would say that it was diet related.
There’s a study going on right now
through the CCFA
that’s studying two different kinds of diets
and what effect they might have
on Inflammatory Bowel Disease.
That’s an area that a lot of patients feel are important.
But that, I really think, was a crowd source.
I think that anyone that’s not paying attention
to what’s going on out there
is turning a blind eye
on the most important information
that they could have
about what research needs to be done.
Good luck.
Good night.