My name's Tracey Jourdain, and I have Ehlers-Danlos syndrome.
Ehlers-Danlos syndrome is a genetic complex disorder
which affects collagen in the body.
And collagen is the glue that holds us together.
So, it helps to support structures such as blood vessels, organs,
ligaments, skin.
It means that as the connective tissue is weak,
if I fall over, for example,
a normal person mght be just be able to heal in six weeks.
I'm more likely to dislocate or partly dislocate,
and once that starts to happen, my body can't heal itself without help.
Ehlers-Danlos syndrome has significantly impacted my life
in a very negative way.
It affects my ability to function because of the amount of injuries
and untreated injuries that I've endured over the years.
I was in my late 30s when I was diagnosed,
but I was born with a birth defect that should have
pointed the way toward the condition.
So it took decades to be diagnosed.
You're much more prone to injury with Ehlers-Danlos syndrome,
because your connective tissue is weak.
The glue that holds your body together is not working properly.
And it means that when you're injured,
the injury is far more significant.
And it takes longer to heal, and you have very limited treatment options.
And unlike most in the normal population,
you won't heal unassisted.
I would try the physiotherapy programmes that were painful for me
or damaging me, and I'd get more damaged.
But I knew from experience that if I let the muscles waste any further,
I was gonna end up in trouble.
With muscle wastage, it means that the joints have less support.
You've already got weak ligaments, weak structures holding,
and if you let the muscles deteriorate,
you get in real trouble, and that's where you end up bedridden.
With the injury, I've gone from not being able to dress myself,
not being able to shower myself, not being able to drive,
to being able to do all of those functions.
I was fortunate enough to be seeing a doctor who was 90 years old.
And as soon as he examined me, said that be believed
I had some sort of issue with my connective tissue,
and to go to a geneticist and find out what the issue was.
The only time I've been emotionally harmed is when symptoms
such as injury symptoms haven't been believed.
And that can be very painful for me.
Psychologically, I am healthy and I cope really well.
But that, I believe, is because I have support of my husband,
my family — I've got supports in place.
I can work. And I think working was a major thing for me.
After my injury, it was very difficult
to sit there and do my job.
So then I was referred up to Dr Burling for sclerosing injections.
And those sclerosing injections goes into the injured bit of the ligament
and just builds up a bit of extra tissue with each injection.
And that gave me the ability to actually start exercising,
and then we started doing the manual therapy, physiotherapy,
sclerosing injections together,
and my progress has just been exponential.
The quality of my life is significantly improved.
My pain levels have gone down.
But more than that, I do all my own personal cares.
I am able to work part time.
I'm able to drive myself places. I'm able to get out and socialise.
And I think my life has improved...
you can't actually put a quantity on it,
but it's been massive for me.
It's taken me four years to get to where I am.
I'm probably a good six months away
from finishing my rehabilitation programme.
I think the number one, from medical literature
and studies that have been done and my own experience
is don't palm us off in the psychological category.
If people need psychological support in addition, that's fine,
but look for what the actual cause is,
and it won't be psychological issues causing the pain the dysfunction.
It'll always be physiological.
I think Ehlers-Danlos syndrome, statistically, we'd have around 1800
with the condition in New Zealand.
But it's now starting to be recognised
that it's most likely a lot more common than that.
I think for medical teams, one of the things I'd say
is don't give up on us.
We take time. We take effort.
But the positive results that we achieve
are just amazing with your help.
And for people suffering Ehlers-Danlos syndrome,
this is a disability, and it can be manageable.
And if you're prepared to put the effort in
and you can get a team around you that won't give up on you
and that will give you best care and practices,
your life can actually be significantly improved.
Captions by Able. www.able.co.nz