Imagine if you're underwater and you're trying every effort that you can to gasp for breath.
And that desperation as if you're trying to come up for air,
Having an asthma attack - is really hard to explain - when I'm well.
It's kind of like having someone put an anvil on your chest,
and you can't breathe because of that weight on your chest and you cannot get it off.
It feels like someone's kinda choking me, and then I start coughing.
I sound like a monster, kind of, and it's exhausting.
Until you see what it's actually like to have a full blown asthma attack,
you cannot make people understand.
When you say I can't get down the stairs, I can't feed myself, switching the nebuliser on
I literally can't do that.
People think it's for physical things, it's not just that, it's going to movies,
it's going to the mall, it's walking the dog, it's just normal, everyday things.
So yeah, it is very much an invisible disease.
Asthma is the most common respiratory condition in the world,
but severe asthma is more about day to day symptoms, frequently, 365 days of the year.
And it's a variable condition,
so makes it really hard for people to plan their lives.
It must be a truly terrifying experience to not know how
well you're going to be on a day to day basis
and not know whether the next attack
is going to mean that you're in intensive care.
I've suffered from asthma ever since I was 18 months old,
so it's kind of all I've known.
And I did spend so much time in a hospital.
A friend that I became really good friends with from the age of 14.
she was just on four hourly nebulisers, started coughing,
she started to have a bit of an atack and she said,
I'm going to have to walk to the nurse's station.
And then the next minute she arrested.
And it was so scary.
So scary.
And this is what I think is important to know, because
you can be fine one minute and
absolutely not the next.
SINGING
From almost first week,
she had eczema, so when she was nine months, we did the first test.
SINGING
My asthma probkems kind of evolved when I was like 10 maybe.
And I started having problems while playing soccer.
I had my first asthma attack during the pollen season.
After that, it was kind of a bad spiral.
I have quite a extreme allergies,
All of my allergies trigger my asthma.
Polleen, dust, cigarette smoke, perfumes.
I don't think people even think about that.
the smells could make someone ill.
Taking the bus to university,
there's always someone that just smoked or puts on
way too much perfume.
I'm studying to become a bio-medical scientist
I love learning new things
and I always wanted to understand what is wrong with me
so I could know how you possibly could fix it.
And I think that's meeting patients
when you've been a patient, I know how it is
to sit in the chair that my patients will sit in
and I know how it feels to have heavy breathing
and I know how it feels to be nervous
when you're going to the doctor.
It took many, many years for me to actually be diagnosed with asthma.
I would get sick.
I would go to the doctor.
He would give me antibiotics
for a sinus infection,
and he would give me a puffer to help my breathing.
And this went on and it got more and more frequent.
And then he would give me an oral steroid.
And then a few months later it would happen again.
And he finally got to the point that he said,
You're not getting better.
We need you on these all the time so you can function.
The oral steroids.
they have saved my life, many times.
They have terrible side effects, really awful.
They would give me a bloated face, bloated stomach.
I can't sleep because of them.
They affect your moods.
You can feel that mood coming over you.
I now have been diagnosed with osteoporosis.
They're just not nice.
There's no magic bullet.
There's no simple diagnostic test,
there's no treatment that's going to fit everyone.
And I think where we are now is we've got multiple different treatments
Because we've had oral steroids for a long time.
It's very easy to be relatively relaxed about them
and because we also see that they do save lives.
But invariably when people come
and see me, their number one concern is the oral corticosteroid
and the number one question is, how can I get off these drugs
(coughs) Yeah, this is me, coughing from having difficulty breathing.
And this is one of my best friends
and one of my worst enemies.
Cortisol, everybody.
My severe asthma attacks is that I don't react the way you're supposed to do.
Then you come to the doctor and she tells you that
you don't have a problem.
And every time after that, I've,
like, postponed going to the emergency room.
People would come and they get upset that it's taken
so long to get to someone who understood what was causing the symptoms.
And the only way that people can really get the care they deserve
is to be put in front of someone who actually understands
that, sees it on a regular basis, and isn't going to tell them,
actually, I think you're okay.
I just feel that I've slipped through the net.
When I was 17, I was diagnosed as one of the most severe asthmatics at that time.
I'm now 40
and
I've been suffering all this time.
And to go to have a DEXA scan last week,
and to be told how bad my bone density is at the age that I am.
I've just come out of the doctors, the news wasn't great.
My bone density is very, very low.
really what it should be for someone twice my age.
I've now been put on more medication.
Here's my shopping bags for today.
And this now came back from osteoporosis.
When people have more severe asthma,
we know that you really need to see a specialist.
We need to get much better
at making that initial diagnosis in primary care.
And the early referral is particularly important now
because we have lots of new treatment options, not perfect.
we're nowhere near talking about cures yet,
but we have treatment options
that allow people to live their lives again.
When we moved to the specialist, the care was much better there.
It was like flipping a coin for me.
They listened and they took a lot of tests.
After that, we changed my whole medication and it got a lot better.
My doctor was very good because when it got to the point where he felt he couldn't
get things under control and I was too sick, he sent me
to a specialist.
I'm so incredibly grateful
that now my asthma is so well under control
that it doesn't hold me back from anything anymore.
On March break I had three of the grand kids and we were skating
and we went to play it and we went to a butterfly conservatory
and I never would have considered going in there before
because the humidity would have sent me spiralling
and now I just yeah, not a problem.
SINGING
I've always loved to sing.
It strengthens your lung functions.
It's amazing.
It's kind of been something that I've been able to do no matter what.
Frida is extremely positive.
She's not staying at home just because she's afraid,
and that's a great way to live.
SINGING
One of the best things about being a severe asthma doctor,
is we can truly transform lives
People come back to me now and say, thank you, I've got my life back.
I walked my kids to school for the first time ever as a human being,
let alone a doctor.
That's just such a wonderful thing to happen.
Before, when my asthma was very bad, I was afraid to go out kayaking by myself.
There's nothing that stops me now.
I do whatever I want.
If I want to try something, I'm going to try it.
And having severe asthma doesn't hold me back anymore.
The greatest needs for people with severe asthma
is to be properly diagnosed by a specialist.
And if the proper diagnosis is made early on,
perhaps they won't go through the years of suffering that I did.
Who?