(upbeat music)
- Welcome my friends to the Bob and Brad podcast
produced by Bob and Brad,
the two most famous physical therapist on the internet.
I am Bob, I exactly one half of the Bob and Brad team,
and my guest today is Jeannie Di Bon.
She actually is an expert on Ehlers Danlos Syndrome
which is a type of syndrome that evolves
among many things, but hypermobility.
In other words, your joints are double jointed,
if we use a layperson's term.
So I wanna have you join me
in welcoming Jeannie to the program.
Welcome to the show Jeannie Di Bon.
- Thank you, thank you for having me today.
- Really super excited to have you here
because we have over the past five to 10 years
had several requests for doing a show
on Ehlers Danlos Syndrome,
and I never felt comfortable
because I never treated anybody with it.
So I've treated people with hypermobility, but not EDS.
So, why don't we start there?
Why don't you give your backstory,
your background of why you're qualified to talk about this?
- Sure, well, so I'm a movement therapist
and I also have hypermobile EDS
and I know we're gonna talk
about what exactly EDS is in a little while.
So it took me 35 years to get my EDS diagnosis
and during that time, yeah, long time, a long time.
So during that time, I trained, before I knew I had EDS
I trained initially as a Pilates teacher
because I was told to by my physiotherapist,
and I over the years, I studied other things.
So biomechanics, anatomy, pain science, neuroscience
and I brought all this together
into what I now call movement therapy.
And using this method helped me rehab my own body
because one of the things with EDS is pain.
So I managed to rehab myself out of pain,
and then I wanted to share this method with other people.
And I've now have a 14 years clinical experience
working with the community of EDS
as well as my own personal experience.
And now I work with people all over the world
and probably 95% of my clients
have hypermobile EDS or chronic pain.
- Gotcha.
Yeah, first of all, you don't even look 35,
so you must be lying-
- Oh no, I'm, no, no, I'm not, I'm not.
So it took me, so my symptoms started when I was 12-
- I see.
- And then 35 years later, I got my official diagnosis.
So I'm a little bit older than 35.
(Jeannie laughing)
- I do wanna take the occasion to mention your book,
website and YouTube channel right now.
So you have two books.
The first one I have here.
- [Jeannie] Yes.
- [Bob] I mean the second one I'd say.
- That's the second one.
- "Hypermobility without Tears:
"Moving Pain-Free with Hypermobility and EDS".
Now the first book was "Pilates Without Tears"-
- Yes. - And your website
is your name Jeannie Di Bon, Di Bon
and we're gonna have that in the show notes
and your website,
yeah, I think we covered everything, right?
Oh, YouTube channel is also Jeannie Di Bon, Di Bon.
- Yes, that's right, that's right.
- Now Mike has me saying Di Bon.
(Jeannie laughing)
Di Bon.
- Di Bon.
- Di Bon, yeah.
- [Jeannie] Yes, (laughing).
- All right, very good.
Well, let's start off with,
how does EDS typically present itself?
- Yes, well, it's a bit of a strange one
because on the outside
people with EDS might look quite healthy and fair
to normal because EDS is a connective tissue disorder.
So we don't really know what's going on under the skin
as it were.
So on the outside
you could look perfectly healthy,
but underneath, you know, the typical symptoms
that EDS is presenting itself with,
pain is a big issue,
fatigue is a big issue.
Things like having very delicate soft skin,
fragile skin is another indicator.
And then having, because it's connective tissue
obviously, it's everywhere in our body,
people can have multiple organ and system involvement.
So heart problems, lung problems, digestive problems.
It can basically affect any part of your body
and pretty much everyone has a different
sort of presentation of those symptoms.
So no two people are ever the same.
- [Bob] I see.
- Yeah.
- Well, you know, you kind of alluded to this.
I mean, it took 'em 35 years to diagnose you.
Is that- - Yes.
- Typical, I mean is still that way you think?
- Unfortunately, yes.
I mean, we, you know, it is great that I can,
yeah, I'm so grateful that you allowed me
to come and speak about this topic
because part of what I do is raising awareness
because it still is not well enough known out there.
So yes, I still hear heartbreaking stories
all the time from people,
you know, five years, 20 years, 30 years.
You know and the thing
is we see lots and lots of different doctors.
It's not that we are not trying to get answers.
But because the awareness isn't there
people aren't connecting the dots,
and that's the problem that we have.
So yes, it can be really a difficult journey.
- Oh, really frustrating, I can't imagine.
I mean, my God.
- Yeah, it's frustrating because you never get the answer.
When I actually got my answer I was so relieved
because- - [Bob] Right.
- Because you start thinking
there must be something really wrong with you
because there's always something else going wrong.
- Right, exactly.
- So having an umbrella to kind of put it under
actually was a huge relief.
- Sure, absolutely.
So you kind of alluded to some of the symptoms
of our presentations of EDS, but-
- Yes.
- [Bob] You wanna maybe elaborate on that?
- Yeah, so the main reason people come to see me
and the main thing I had was chronic pain,
and that pain could be anywhere in the body.
So very, very common is pain and very common is fatigue.
So chronic fatigue goes hand in hand with that.
But then because of this collagen defect
so EDS is a defect of our collagen
we've got very lax joints.
So we have a lot of instability.
So we have joint pain.
People can obviously be injury prone because of that.
They strain and they sprain themselves,
subluxations of joints, dislocations as well in some people.
But then, you know, if I take my own story,
I've had pneumonia three times,
I've got a mitral valve prolapse in my heart,
I've had digest- - [Bob] Oh my gosh.
- Digestive issues pretty much my whole life.
So migraines, headaches are extremely common.
So it really can impact pretty much everything.
- Gotcha, so are there some common tests for EDS
that you could even try yourself?
I mean, being test or would you recommend not to do that?
- Well, yeah, so you've got the Beighton score
which is something you could do at home.
I mean, you're just sort of testing,
can you bend your thumb back?
Can you bend your little finger back?
Do your elbows hyper extend?
Do your knees hyper extend?
Can you touch the floor without bending your knees
and put your hands flat?
But that's just a test of hypermobility.
So just because someone has maybe hypermobile
doesn't mean they have a syndrome like EDS.
So you can't test yourself for EDS,
you would need to go and see a geneticist
or a rheumatologist to have a official sort of diagnosis.
For EDS, there are 13 different types of EDS.
- Oh my God.
- And yeah, so there's, some of them are extremely rare.
So, you know, very small groups of people,
hypermobile EDS which is the one
that I have is the most common.
And that's the only type of EDS
that we don't know the genetic cause of.
So we know the gene for all the other types,
but hypermobile EDS, we're still working on that one.
So that is a, sorry, that's a clinical diagnosis-
- Gotcha. - As opposed
to a genetic test.
- So it is hereditary in some instances I under-
- [Jeannie] Yes.
- Right. - Yeah, yeah.
So, and we believe the hypermobile one
is as well but they're still researching that.
But yes pretty much genetic hereditary.
- And there's no cure?
- [Jeannie] No.
- Right. - No, unfortunately, no.
So it's a case of management of the condition
which typically should be a multidisciplinary approach
to managing the condition.
- And you play a role in that, obviously.
- Yes, yes.
So my role is helping people to move better,
to move without pain,
to build postural tone, build muscle tone
because we know that really can help alleviate their pain.
- Gotcha.
What is the approximate male or female breakdown?
Is it similar or not?
- No, so you're gonna see a lot more women than men.
It's probably 70% women.
And we know that the female hormones
play a huge role in the symptoms of EDS.
And I think that's why we see
so many more women than men.
And, you know, interestingly,
I mean symptoms often get worse
or often start for people's during puberty,
pregnancy or menopause.
So when you have these big surges of hormones,
that can trigger people's symptoms.
That's where mine started as well.
When I was 12, obviously going into that period, yeah.
- So I'll be very respectful of your time here.
If someone wants to get ahold of you
it's through the website?
- Yes, so Jeannie, wwwjeanniedibon.com.
So there's a contact form on there.
And my email is Jeannie@jeanniedibon.com.
So either way, comes through to me
and I've got all the information there about The Zebra Club
or The Zebra Club, (chuckles)
the books and my clinics.
So yeah, everything's on the website.
- Yep, we got the book here, "Hypermobility Without Tears",
and she also has "Pilates Without Tears".
- Yes, yeah.
- And you got the YouTube channel with some of the access
people can start trying.
- Yeah, exactly.
- Again, thank you Jeannie so much for taking time,
really learned a lot.
- Thank you.
- [Bob] Great source of information, thanks.
- Oh well, thank you so much for having me.
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