(jazzy music)
- Hi guys, I'm Stevie!
And today I'm gonna talk about Ehlers-Danlos syndrome.
Which is a condition that I have.
What's the difference between disease, syndrome, condition,
all of those words?
- [Camera Person] It must mean the way in which you get it.
Like if you catch it.
- Catch it.
We'll have to do some Googling later.
(keyboard clacking)
So, I asked you over on Instagram
to send in your questions about EDS.
So, be sure to follow me over there
if you want your questions answered next time.
So, May is EDS awareness month,
which might make you think
that you aren't allowed to be aware
of anything else this month.
But it's just a myth.
And we love to learn on this channel.
Not to brag, but I'm also aware of lots of other things.
I am aware of cats and joy and New Jersey, unfortunately.
And for whenever you become
involuntarily aware of New Jersey,
BetterHelp has got you covered.
Today's video is sponsored by BetterHelp,
in honor of mental health awareness month.
Remember how I said it's a myth
that you can be aware of anything else
during EDS awareness month.
It's really shocking,
because people with chronic health conditions
always have perfect mental health.
Do you ever go so deep into a pit of sarcasm
that you don't think you'll ever find your way out?
Slash S, am I right?
Anyway, let's get to the questions.
I'll tell you about BetterHelp a little bit more later on.
So, the first question, "What exactly is EDS?
and how does it affect your daily life?"
So, EDS is short for Ehlers-Danlos syndrome.
And it is a connective tissue disease,
or it affects the collagen in your body.
Collagen is found in the extra cellular matrix.
Which sounds like another reboot of the matrix
that will do even worse than the last one.
Fortunately, EDS can be even more complicated,
painful, and trying than that movie.
I'm sorry, I'm going so hard on the matrix reboot.
I didn't even see it.
Neither did anyone else.
There are so many types of EDS.
I have the type called hypermobility type,
or EDS type three, or hEDS.
And while it is not my favorite type of head to get;
it is the most common type of EDS.
And researchers are still looking for the gene mutation
that causes it.
So, something that a lot of people talk about with EDS
is your joints.
Even though, remember when I told you
the extra cellular matrix,
collagen is everywhere that there are cells and tissue.
But one of the common things
that makes people go and get diagnosed with EDS,
is because their joints sublux and or dislocate.
It's kinda like being one of the X-Men,
except your superpower
is that your joints don't stay in the right place.
I'm mentioning a lot of nerdy things.
I'm sorry, that's not a symptom of EDS.
I don't know what to blame that on.
Really trying to make this video funny
instead of depressing.
And before we get to the next question.
Let's talk about BetterHelp.
Today's video is sponsored by BetterHelp
in honor of mental health awareness month.
This year's theme is together for mental health.
And it's all about sharing personal stories
in hopes of encouraging others
to prioritize their mental health.
Therapy has been so helpful for me.
Specifically when I was going through the diagnostic process
of getting my diagnosis, and trying to get my diagnosis,
and then coming to terms with it after diagnosis.
Also, I love forcing people to listen to me talk
for prolonged periods of time.
You're here watching this video.
So, I win.
Another big theme of mental health month,
is advocating for access to mental health care.
This has always been one of the big goals of BetterHelp.
They offer customized therapy
that includes video, phone,
and even live chat sessions with your therapist.
So, you don't even have to see anyone on camera
if you don't want to.
Because sometimes you want to do therapy in a shirt
that you've been wearing for over a week,
and is now legally become a part of your body.
And maybe that's something you should talk about in therapy.
BetterHelp is more affordable
than traditional online therapy.
You can apply for financial aid during the signup process.
And they accept HSA benefits.
Because not only rich people have problems.
There is a broad range of expertise
in BetterHelp's 20,000 plus therapist network.
And that gives you access to help
that might not be available in your area.
'Cause what area has over 20,000 therapists,
am I right?
They have therapists that specialize
in LGBTQIA plus, topics and issues.
Or I guess if you want a therapist
that you can talk to about rich people problems,
I'm sure they've got you there.
My son, Chauncey, says that his caviar
doesn't have enough truffles.
So, I hunted him for sport.
- [Camera Person] I have no idea what you just said.
Where are you supposed to be from?
- I don't know.
I'm supposed to be from rich people land.
Anyway, was that relatable to anyone?
You just fill out a questionnaire
to help assess your specific needs.
And then you get matched with a therapist in under 48 hours.
It's so simple, even simpler
than hunting Chauncey for sport.
And that was shockingly easy.
After that, you can schedule secure video
and phone sessions.
Plus you can exchange unlimited messages.
Everything you share is confidential.
So, no one will ever find out
that I hunt my son Chauncey for sport.
Chauncey.
You can also request a new therapist
at no extra charge at any time.
If you know anyone who is struggling
with their mental health.
Be sure to recommend BetterHelp to them.
You can use my link to get 10 percent off your first month.
That's, "Better H, E, L, P."
click the link in the description
to celebrate mental health awareness month
with BetterHelp.
And to show Chauncey that you mean business.
So, next question,
"Can it be mild and unnoticeable at first?"
So, two people in my life this week
have told me that they got an EDS diagnosis.
After I like, pointed out their symptoms to them.
And since it's currently EDS awareness month,
I really commend them on fully celebrating
and really committing to it.
You know what I mean?
That's kinda like if you were celebrating Arbor day,
and just like became a tree.
So, to answer the question.
I think the answer to this question is, yes and no.
I think we as a society have a urge,
this overwhelming urge
to tell kids when they're experiencing a symptom
that everything's gonna be fine.
Everything's okay.
All of that is totally normal.
Which everything is normal, but like, is it though?
Is it really?
Some people might think it's normal
if I dress this little guy up in a bow tie and a suit,
and trotted him around house to house
in preparation for afternoon tea.
Am I right Troy?
So, for me it took so long to figure out
that the pain that I was experiencing,
wasn't the pain
that everyone else in the world was experiencing.
If that makes sense?
Because everyone told me it was normal.
Like, what does it actually feel like
to not have your body be in pain all the time?
What does it feel like
to not be able to feel your digestion?
And it's really interesting to me to like,
learn how other people like, experience pain.
Like, how does it hurt when you're hungry?
My pain is always at a level
to where it feels like a million tiny punches
to all of my joints.
Which sounds adorable, but it's not.
So, I guess I don't really notice
when I'm getting punched in the stomach, not to brag.
So, to actually, too long didn't read, quick answer.
If you listen to people around you
when they say that nothing's wrong with you.
Then EDS can go unnoticeable for a long time.
So, the next question is how to get diagnosed.
So, since the specific gene mutation
has not been specifically identified for hEDS.
It's basically just a clinical diagnosis.
Which means you go to a geneticist or a rheumatologist
or whatever.
And they look at you and go, "Yep, it's EDS."
I mean, it's a little more involved than that.
There's like a few different sections.
I'll put a link in the description
of the updated 2017 diagnostic criteria.
So, that's what I did
before I asked to go to a geneticist
and like basically rated myself,
to see if I could diagnose myself.
And it kind of like, works on a point system.
So, you have to like Google what papules are.
You know what I mean?
If you have someone in your family that has it,
then you have a higher likelihood
of getting diagnosed with it.
And part of it is something called the Beighton score,
which is how many weird positions
you can move your joints in.
And it scores out of nine.
The next question is,
"Tell me about EDS's connection to POTS."
So, when I first got diagnosed with EDS,
I got diagnosed with POTS at the same time.
Like at the same appointment.
And I made a happy little video right after I got diagnosed,
and you can watch it here.
'Cause what's the only thing better
than get getting diagnosed with one chronic illness.
That's right.
Two chronic illnesses.
So, since collagen is all over your body,
and EDS causes a disruption in collagen production.
The collagen in your blood vessels
does not work correctly when you are changing position.
From sitting to standing, or lying to sitting, et cetera.
So, when you stand up,
the blood rushes away from your brain
and can cause you to pass out.
So, your heart is like,
"Whoa, we're not getting enough blood to the brain."
So, it starts pumping really fast
to try to compensate
for your blood vessels not constricting.
Which is basically like you're constantly
doing cardio workouts,
when you're just sitting here.
And when your body is constantly doing cardio,
it is prioritizing that,
instead of other things in your body,
like digestion, et cetera.
Which can cause issues in the long run.
Next question.
"What is your simplified explanation of EDS
when people ask?"
The thing that I always tell people
when they ask me,
like a quick explanation of what it is.
Or people that just aren't understanding
when I go on and on about like,
the collagen matrix or whatever.
When I go from laying down to standing up,
I shrink two inches,
because all my joints collapse in on themselves.
That's like a quick explanation for them.
Obviously that doesn't actually happen every single time.
But, my height does fluctuate.
Depending on my time of the month.
I don't know.
That kind of gets the point across to people
to at least understand the pain that EDS can cause.
If I'm standing when I tell someone this,
they usually usher a chair over and they're like,
"Oh, sit."
"How does it affect your everyday life
in ways people may not realize?"
This is a great question.
I wish I had, like I could make a whole video
about this specifically.
But I would say the accessibility
of everywhere I go,
is kind of an unexpected thing to people who don't have EDS.
Having to like,
place bets on every single choice that I make.
So like, I have to place a bet
because I don't know the potential consequences of that bet.
"Hey, do you want to go to this coffee shop,
and then also go to a meeting after that?"
And then I'm like,
"Okay, how many steps are there in the coffee shop?
Am I gonna be like mentally able to do that meeting
after I go to that coffee shop?"
So, it's literally like gambling,
like, yes, technically I can take those stairs.
But can I afford to make that bet?
What do I have to do for the next week?
When is it most important to save that like energy money?
You know?
Also there's so many other ways
that it like randomly affects everyday life.
Like EDSer's need more local anesthesia.
And also it wears off faster.
Which is why I chug novacain at the dentist.
So, the next question is, "What works for joint pain?
I have yet to find anything that works for my EDS pain."
So, I'm always pretty wary to recommend treatments,
because I am not a doctor.
And what works for me may not work for you.
And so many of us chronically ill peeps
are desperate for a pill that will make their lives easier.
Which I can totally relate to.
But I'll tell you a few of the pills
that have helped me tremendously.
So, the first thing that ever helped me,
which I'm not sure
if this is directly tied to my EDS or not.
But I think that I have mal-absorption
of fat soluble vitamins.
So, who knows if that is connected to EDS or not.
The first thing that ever helped was vitamin D.
I took so much vitamin D, cause my vitamin D was so low.
And because I have a hard time absorbing it;
I take way over the recommended amount.
So, please consult your doctor about this.
The next thing is methylated vitamin B complex.
And low vitamin B is directly tied to my bone pain.
Not necessarily my joint pain,
but like the long bones in between my joints.
Once I started having a regular dose of vitamin B,
and was on it for a while;
my bone pain disappeared.
And then one time I like,
I like ran out, or forgot to take it or something
for a few weeks and it came back
and I was like, "Oh my God,
I forgot how much pain I was in before this."
So, I immediately started taking it again, obviously.
So yeah, I take vitamin B.
No idea if that's connected.
Magnesium.
So, magnesium helps me poop,
but also it's regarded by so many professionals
as like the most important thing
for EDSer's to take.
Hundreds of processes in your body
need magnesium to work.
So, I take oral magnesium, and I also do magnesium baths
with like magnesium salts.
But not that often, because it's really expensive.
'Cause you have to use so much salt in the bath
for it to like make a difference,
and they're very expensive.
But you can make a magnesium salt spray
with distilled water.
And that helps it last a little bit longer.
'Cause you just spray it directly on your skin
instead of in a giant thing of water that you then soak in.
Do you know what I mean?
So, those are all really great.
But I did start taking a new one
because I was reading
that MSM is recommended for people with EDS.
And this new one has MSM in it.
Which is not the same thing as an MLM, apparently.
And no, I'm not recommending essential oils.
Don't worry.
So, MSM has been shown to help in some studies
with osteoarthritis.
Which is something that EDSer's
are really prone to, arthritis.
But the one that I'm taking
has a bunch of other stuff in it.
And I think the dosage of MSM in it
is only like a hundred milligrams.
But I kinda just wanted to try this
and see if I could notice any difference.
And I think I'm noticing a slight difference,
but I want to try taking like, a lot more.
Like 1500 milligrams, I think of MSM.
But I need to find like, a reputable seller.
I'm pretty sure I can notice
a slight change in my joint pain.
But also this complex that I have
has a bunch of other stuff in it,
like turmeric and other stuff that's good for your bones.
It's like a bone complex.
And the next thing that I have not tried
but I have heard a lot about
and I've been doing a lot of research about,
but it's very difficult to get
and it's not super approved by every health service.
It is called LDN.
I'll post a link below
to like learning about LDN
and all of the things that it helps with,
and how it works and all of that stuff.
And there's a lot of studies about it going on.
But yeah, it's low dose naltrexone.
So, I think that'll be the next thing that I try
before pain meds.
Because I've been trying to put off pain meds
as long as I possibly can.
So, the last question is, "Why zebras?"
So, if you don't know, EDSer's, we call ourselves zebras.
And a herd of zebras is called a dazzle.
So, when someone gets diagnosed;
we say welcome to the dazzle.
And the reason that we are called zebras
is because in medical school doctors have a saying,
"If you hear hoof beats, think horses, not zebras."
Meaning if a patient is presenting with a symptom,
you should think of the most common disease
or thing that could be causing that symptom
instead of the most rare thing.
So, when you hear hoof beats
you don't automatically think
there's a herd of zebras outside.
You're like, oh, it could be horses.
'Cause those are more common, I don't know.
Anyway, but sometimes it is a f*cking zebra.
So, we call ourselves zebras
because EDS is considered an extremely rare thing.
A lot of us have experienced medical gas lighting.
And for a genetic disease that you are born with,
the average age that people get diagnosed with EDS
is extremely late in life.
Yay zebras.
Am I right?
Thank you guys so much for watching this video.
I've gotta go,
because I gotta dress this guy up all fancy
and take him around for afternoon tea.
Right?
Are we gonna go hunt Chauncey for sport together, darling?
(fancy violin music)
Thank you so much for watching.
Leave any additional questions
that you have about EDS in the comments.
And if you would like to join my wonderful Patreon family,
click the link in the description.
Because we'd love to have you
and my lovely patrons make videos like this possible.
See you guys later.
Bye!
You have the stinkiest breath, Troy.
Did you know that?
(jazzy music)