You're listening to mistreated. I'm Nam Kiwanuka.

No other disease in the history of modern medicine has been neglected in such a way as Ella's Danlo syndrome.

That quote is attributed to Professor Rodney Graham, a leading EDS expert and rheumatologist.

Ella's Danlo syndrome is a genetic disorder that affects the body's connective tissue which is primarily made up of collagen.

And in the case of Ella's Damos patients, the collagen is faulty.

The result is that it doesn't support you in the way it's supposed to.

Connective tissue is all over our body.

EDS can affect the ligaments, skin, blood vessels, organs, eyes, gums, and digestive system.

Some of the conditions that EDS can cause physical pain all over your body, mass cells disorders, POTS, painful menration, chronic fatigue syndrome, Crohn's disease, neurode divergence, brain fog, retina detachment, swallowing disorder, depression, cranial cervical instability, and many more lifealtering conditions.

EDS is commonly missed, undertreated, and misdiagnosed.

It also can impact people in different ways. It can be mild for some but disabling for others.

In severe cases, it can be life-threatening.

This uniqueness makes it harder to diagnose.

According to a recent article published by the University of Toronto, the estimate to be diagnosed is between 4 and 16 years.

And early diagnosis is crucial.

Celebrities like Lena Dunham and Jamila J have shared that they have EDS.

Jamila Jamil shared that she was lucky to be diagnosed at age nine because as a child she knew that she shouldn't play contact sports.

A lot has changed since Ellis Danlo syndrome was first classified in 1968.

Back then five types were identified.

Today there are 13 different categories of EDS.

Experts worry there are more classifications because of how underststudied the condition is.

and there are very few clinical experts who understand it.

That lack of research means that people with EDS will continue to suffer.

So, what else do we know?

According to Canada's EDS Foundation, the most common type is hyper mobile and it represents 90% of those diagnosed with EDS.

Women make up approximately 70% of diagnosed cases.

EDS is associated with a higher risk of early pregnancy loss, preterm delivery, and still birth.

And if you need a C-section, it can create additional dangers.

In short, EDS is more than quote just loose joints.

Today's guest, Sydney Jazualdi, was diagnosed with cranial cervical instability, which I mentioned earlier can be caused by EDS.

Sydney has not been able to confirm she has EDS.

In her case, a car accident triggered this.

It is common for EDS patients to experience a trauma like whiplash where the ligaments are overstretched and because there are made up of faulty collagen or damaged and no longer able to adequately hold up the head and upper spine.

Today's episode will discuss the roadblocks that Sydney is facing.

Here's our conversation with Sydney who tells us how a car accident changed her life.

Please listen with care.

Sydney Jazwaldi joins me now.

Thank you for taking the time to speak with me.

Um, can you take us back to July of 2023?

You were in a car accident. What happened?

Yeah, so July 21st, 2023, I was rearended while stopped at a red light.

The driver behind me never attempted to break um before the impact.

So, at first, my doctors believed my injuries were limited to more mild soft tissue damage.

So, things like whiplash or a concussion

um because the standard imaging didn't reveal the full extent of the damage that did occur um from the accident.

But over the next 6 to 7 weeks following the accident, my symptoms began to change dramatically.

I started losing my balance when walking.

I developed drop foot, which meaning I could no longer fully lift my foot off the ground.

My muscles in my legs and my arms started to become extremely weak.

And I lost a lot like most of my dexterity and grip strength in both of my hands, especially my right hand.

I still can't uh write with a pen for longer than a minute without losing feeling in my hand.

But I would have to say the most frightening part was when I began having frequent episodes of dysphasia where it feels like my throat muscles would forget how to swallow when I was eating something and especially drinking something.

And I also started having episodes where my lips and my fingernails would turn a purplish blue.

And my body felt like it was forgetting how to breathe automatically.

And there was just a lack of oxygen in my body and and extremities.

After a car accident, there are certain things that happen like with concussion or maybe uh a body aches, but this doesn't sound that like that that's what was happening.

What did doctors say was happening?

Well, their kind of initial reaction was this isn't normal.

Um like usually after an accident people as time progresses uh following the accident they start to improve but I was going in the complete opposite direction as I was deteriorating as more time passed.

I've seen so many specialists and I just felt very like written off and not believed and not understood and they all

loved to kind of just jump to the conclusion of well have you tried therapy you know cuz I have anxiety in my chart from the past which I don't know who doesn't have anxiety honestly in this day and age um

I didn't feel believed D by the doctors at all.

So even though you had physical symptoms, it was being dismissed as something that was just in your head.

Exactly. Like psychossematic kind of the overall message I kept getting was I shouldn't be having these symptoms and issues that I was experiencing.

Um, and the majority of doctors I've seen suggested that my symptoms, like my inability to walk without tripping over my feet, my drop, but my fingers and and lips turning blue were mostly also due to unresolved psychological trauma.

Um, an example like being bullied in middle school or something.

Um, and they, one doctor actually told me that I needed to stop going to the emergency room for what they believed and wrote in my chart were anxiety attacks.

Um, yeah.

So, that it was just very disheartening um, and [clears throat] scary because

I just was scared of the symptoms I was experiencing and was looking for somebody to help me, but I was getting the complete opposite of that.

How has your life changed? Uh, since the car accident,

I mean, in in every single way, honestly, like since the accident, I've lost almost all of my independence and freedom.

I now rely completely on mobility aids, and I need to use a walker inside of my home and a wheelchair anytime I leave my home for medical appointments.

Um, I'm no longer able to complete basic daily activities without help from my parents.

Like some examples are showering, washing my hair, getting dressed, preparing meals.

I can't grocery shop. I can't attend medical appointments on my own or drive.

I haven't driven since the day of the accident.

Um, and I guess just to give you a bit of a, you know, snapshot into what my daily life is like, like at night to get to my bedroom, which is upstairs, which is about 14 steps, I have to crawl up on all fours,

and someone has to brace behind me in case I lose my balance or I fall and at the same time push me up from behind because I just no longer have the strength to climb up on my own.

Um, and I live with constant pain, dizziness, severe neurological symptoms, and my energy is so extremely limited.

So, even simple tasks like showering or reading something complex can leave me exhausted for hours or even sometimes the rest of the day.

And I can usually only manage one virtual appointment, one phone call, or writing two to three emails a day.

And I really have to carefully plan how I use my energy before and after.

Like at, for example, inerson appointments often put me out of commission for days afterwards.

and I'm essentially couch bound and bed bound.

And the only time I get up is to use the washroom during the day.

Um, there have also been times when

my symptoms have become so severe that I've had to sleep on the couch in my living room downstairs for weeks um or months because I was just too weak to make it up the 14 steps to my room.

And at one point, my family and I were even considering buying a commode to keep in the living room because getting up to use the bathroom

was more energy than my body could handle.

And instead of being able to focus on recovery, I've had to basically spend every ounce of energy the last 2 and 1/2 years almost just to access medical care um and care that should be my right as a Ontario citizen with OHIP.

Um as a journalist I'm feeling some things and as a mom I'm feeling other things.

Um, we Ontario is one of the most wealthiest provinces.

We live in Canada, uh, a G7 country.

And this is something that you've, uh, been dealing with for 2 years.

Yeah.

So, eventually you were diagnosed with something called cranioervical instability.

What is cranio cervical instability?

Yeah. So cranioervical instability uh also kind of referred to as CCI is basically a structural condition where the ligaments at the base of the skull become too loose which allows the skull and the upper cervical vertebrae.

So usually C1 and C2 which is right below the base of your skull to shift abnormally within the neck.

And you know in somebody healthy without CCI these ligaments are typically strong enough to hold your skull and vertebrae securely in place.

And under normal circumstances, there is very little to to zero movement in this area.

And when that stability is lost, the abnormal movement of the skull and upper cervical vertebrae actually can put pressure on the brain stem and major blood vessels in that area which include critical veins and arteries that get blood into your brain and out of your brain and also cerebral spinal fluid which is the fluid that surrounds our brain and spinal cord.

And this compression can cause severe neurological symptoms and disrupt the function of the autonomic nervous system.

So kind of referring to earlier when I mentioned how it felt like my body would forget how to breathe or swallow.

Um it's very connected because our our autonomic nervous system controls everything that our body does automatically.

So our breathing, our our blood pressure, our heart rate, digestion, bowel movements, and you know, our immune system, and basically everything that you don't have to think of doing consciously in your body,

how were you finally diagnosed with CCI?

Yeah. So after kind of dealing with the Ontario doctors and having them kind of give me the runaround of, you know, the psychosmatic and everything else argument, I just started researching online and trying to figure out anything I could if other people have ever had such a sudden deterioration similar to mine um following a motor vehicle accident or or anything else.

And I found a lot of groups online, support groups of people who had dealt with very similar situations to me with the exact same symptoms.

And through this research, I found my neurosurgeon in the US who is in New York State in Long Island.

And he is the one that formally diagnosed me uh via MRI, imaging, CT scans, and invasive testing, which I did back in May.

I had to go to New York for that.

Oh, so you had to leave your province, your country to get even just a diagnosis in another country.

Yes, that that's correct.

And back in April of 2024, I kind of through my research found out that there's only a very few neurosurgeons in the world that specialize in this condition.

Um, so the first doctor I consulted was actually in Barcelona, uh, Spain.

So I flew there and got a bunch of imaging done, did some, uh, testing with him that wasn't invasive and he gave me a diagnosis as well.

So then I came back to Canada.

So this was, yeah, around April, May 2024.

And I tried bringing my report and imaging on CDs that I got to Ontario neurosurgeons

and they would not even look at it.

I um I tried to give it to them.

I tried to explain to them, you know, like, hey, I I figured it out.

This is what's wrong with me and like we can can we fix this?

And they just had they didn't want anything to do with it or me.

It felt like [sighs and gasps]

well I read that uh cranial cervical instability impacts more women because women are more likely to have something called correct me if I'm wrong in how I am saying it Ellis Danlos syndrome

um and cranial cervical instability is caused by it.

Do you have Ellis Danlos?

So yes, you are correct in that and um I haven't been formally assessed or diagnosed with Ellers's Danlo syndrome.

So I can't say for certain but what I think is important and to understand is that crane cervical instability is very often seen in people with EDS Ellers Danlo syndrome and the majority like you just said of these patients are women um which is why advocates are pushing so hard for greater awareness and recognition.

And I believe it's no coincidence that a condition that predominantly affects women has been so under recognized and neglected both systemically and medically.

Um, but it is also well recognized that trauma alone in my case such as an MVA, motor vehicle accident, can cause this kind of ligament injury and instability in people both with or without EDS.

Can you help us understand what EDS is?

What is Ella's Danlo syndrome?

So Ellers's Danlo syndrome there are multiple types of it.

Um different subtypes.

So for example there's like vascular Ellers Danlos, classic Ellers Danlows, um hyper mobile ellers danlows which I believe is the most common one.

Um but basically people with Ellers's Danlows our bodies do not produce collagen effectively.

And so that affects our connective tissue and fascia, which is basically what holds everything together.

Your muscles in place, uh, ligaments connecting other muscles to the muscles beside it and your joints holding your joints in place.

Um, is there a cure for it?

Not that I am aware of.

I believe it's more learning to live with it um and having accommodations in your lifestyle that will help support your body um and needs.

Uh it's very complex because each subtype of elders dan Lowe's has different symptoms associated with it.

Um, so yeah, it's kind of a complex question

and for people who are listening to the podcast and not watching the video, um, they might not, um, know that you have a neck brace and you have to wear that all the time.

Your family physician has referred you to eight doctors at spinal clinics across Ontario, but you've been denied consultation.

Do you know why?

So, yes, I I do kind of have an idea why.

So to qualify for the OHIP out of country prior approval program which is a program where OHIP can cover the cost of surgery performed outside of Canada if it isn't available here.

The Ministry of Health requires a very specific support letter from an Ontario specialist who is considered equivalent to the outofcountry surgeon who would be performing whatever surgery or procedure needed.

And part of the rules is that the Ontario specialist must provide a support letter saying three important points that is part of the healthc care act.

And without these three points written and submitted alongside the out of country application, it results in an automatic denial.

And my family doctor referred me to nine neurosurgeons across the GTA, including skull-based neurosurgeons, orthopedic spine surgeons, and also a spinal clinic in Missaga that has several different neurosurgeons working out of it.

And I received formal denials from eight of the nine referrals sent and the nine just never responded.

So, the intent behind all of these referrals was to obtain that required support letter for the OHIP at a country application.

And the need for this letter and the urgency given my worsening neurological and physical condition was very clearly stated on every single referral.

And we also provided all the relevant imaging including MRIs, CT scans of my neck and my brain and as as well as whatever medical records were applicable

and every single neurosurgeon said no.

Um, four of the rejections stated that the reasoning for the rejection was that this was out of their scope.

Um, two said that their weight lists are already too long and one said that they only accepted referrals from surgeon to surgeon, not family doctor to neurosurgeon.

and another one said that there was no need for me to have a neurosurgical consultation.

It's very frustrating because I've been stuck basically in a bureaucratic loop because I can't get an Ontario neurosurgeon to provide the required support letter and without that letter OHIP will automatically deny my application for out of country funding.

So that's trying to obtain a support letter has been what I've spent all day every day doing for the last year and a half basically.

Um, and I've tried advocating with my MPP to have them reach out to the Ministry of Health on my behalf.

I've tried to submit a freedom of information request to figure out the supposed names of these surgeons at OHIP says can help me um in Ontario.

I had my MPP she made a member statement at Queens Park in Toronto uh about my situation.

I've had a news article published and I've even submitted a human rights application through the Human Rights Tribunal of Ontario

basically explaining this loop that I and so many other people in Ontario with cranioervical instability are stuck in that is leaving us without access to life-saving neurosurgical care.

It sounds like because of red tape, you're just kind of in a no man's land.

Um, and you've actually you actually um created a GoFundMe to raise money so that you can travel to the States and pay for the surgery.

Um, are you going to go to the States or do you need to get signed off like uh where are you at with that now?

Yeah. So, the GoFundMe was to pay for the invasive testing with the neurosurgeon in New York that I mentioned earlier.

Um, because he will not operate unless you ask like meet a certain threshold of measurements and symptom improvement.

So basically the invasive testing mimicked what they the fusion surgery would do for me and very like luckily for me I had like upwards of 90% symptom improvement in every some of my most debilitating symptoms and I felt like myself again for the first time in almost two and a half years.

So yeah, the GoFundMe was to try and cover the cost of the testing which was around $45,000 Canadian.

So now um since I qualify for the big fusion surgery that will cost in Canadian dollars upwards of $400,000.

So, obviously, I can't afford $400,000 out of pocket without asking my parents to sell our home and give up their retirement savings, which morally I could never ask them to do that, but I also shouldn't have to um because as an Ontario citizen, it's my legal right under the Ontario Health Insurance Act that if a medically necessary procedure cannot not be performed here and it's justified and needed, it should be covered by OHIP and the Ministry of Health.

So, kind of like you mentioned earlier, the problem isn't that there's no pathway for funding, it's that red tape is preventing me from accessing the care that I need.

所以，就像您之前提到的，问题不在于没有资金途径，而是繁文缛节阻碍了我获得所需的护理。

Um, this isn't your first interview.

Uh, you mentioned that you did an interview with uh CBC.

you um your lo your MPP uh you've been in touch with them.

What do you want policy makers to know about what has happened to you?

I want them to know that this is not a oneoff case.

Uh just to give you some context, there is a cranio cervical instability Facebook support group um that has I believe at this point over 800 people in it who all have the exact same story as me in the sense that they have this condition and they can't get any doctor in Ontario to recognize ize it and support their out of country application.

So I know multiple people not even just in Ontario but in other provinces who have had to sell their houses and all their assets to pay for surgery in the United States or Europe or whatever specialist they decide to go with to do the surgery.

Sydney, how would uh surgery change your life?

If I could get and access the surgery that would stabilize my skull and neck and taking the pressure off of my brain stem.

It wouldn't be an overnight fix, but it has the potential to give me my life back.

I could, you know, walk and and think clearly and get back to living independently.

And it's not just about mobility and gaining that back.

It's also about just getting my dignity back and having that stability in my life.

[snorts]

Like I mentioned earlier, when I underwent the traction testing, there was an immediate and noticeable improvement in my symptoms

and my brain fog lifted and I could breathe deeply without restriction and my hand dexterity even improved.

That was one of the tests we did.

Uh, I could write with a pen again normally.

It was like my body finally remembered how to function normally again.

And I mean the surgery could change everything.

And I am genuinely hopeful that it will when whenever I will be able to access it.

Um, it it would just be like a second chance at living and

cuz everything in my life has been on pause since the accident.

And things that healthy people and able-bodied people can do naturally without a second thought, I would finally be able to do again.

And I really do think that I would carry a deeper appreciation for all of it.

You know, being able to bathe myself,

cooking a meal, dancing at a wedding, going for walks.

Um, those small ordinary moments would feel like so much more special.

I think

Sydney, it's been an absolute pleasure having the opportunity to speak with you.

Um, thank you so much for making the time and hopefully this conversation can move the conversation forward and we extend everybody here extends our best wishes to you.

Is there anything else that you'd like to add before we say bye?

We urgently need official recognition and proper diagnostic and billing codes for cranioervical instability and funding for out of province and out of country care when treatment isn't available here.

Um, and I I want policy makers to know that this isn't just about one patient.

It it's about an entire community of people who have been erased by the system and we need acknowledgement that EDS patients with CCI exist and that their conditions are real and treatable.

And the first step for the Ministry of Health and Ontario Ontario Health to assign is to assign a proper diagnostic and and billing code.

And we also know that creating this kind of pathway is possible and it's already been done.

Um a model already exists through Bo HIPS out of country program for a condition uh that is kind of comorbid to Ellers's Danlos.

It's cerebral spinal fluid leaks.

So Ontario already has agreements with two US hospitals to fund and treat citizens with that condition and send them there to get the life-changing and life-saving treatment that they need.

So we know it can be done.

It just hasn't been done yet for people with CCI and Ellers Danlos.

Developing this similar framework would not only allow patients to receive timely surgical care,

but promote collaboration and knowledge translation between Ontario specialists and US hospitals or centers.

bringing that expertise back to Ontario to foster medical advancements here so that maybe one day we won't have to leave the province or country for medical care.

And I just the last thing I want to say regarding this is I want policy makers to know

that this isn't a one-time fix.

For many patients with CCI and EDS,

care involves multiple stages and ongoing surgical follow-ups.

And the treatment plan and the funding must reflect that need and that reality.

Um,

and we're not asking for special treatment.

We are just asking for the same access, recognition and dignity that is afforded to almost every other patient in this province and country.

The difference is is our illness just isn't as palatable.

Sydney, it's been great having you on the podcast.

Thank you so much.

Thank you so much for having me and creating this platform to talk about such important issues.

This was Mistreated.

Thanks for listening.

Because of how complicated EDS and cranial cervical instability are, Mistreated will be doing an in-depth special to look at those conditions, plus the lack of care available and how patients are being impacted.

We hope to have that for you in early 2026.

You can follow our show wherever you get your podcast so that you can get notified each time a new episode is available.

We would love to hear your feedback.

You can write me an email at mistreatedpodcast@tvo.org or reach out to me on my social channels.

Here's a part of an email we received from Joan Bushar in Ottawa.

This was in response to our episode on the Mckenzie report on the women's health gap in Canada.

It reads in part, "I would like to thank TBO and the team of the Mistreated podcast for doing a fantastic job of sharing long hidden information about the systemic challenges women are facing when it comes to their health.

I appreciate the tone of the subjects discussed.

For example, hearing about the guilt of not being able to quote fight through illness and specific health issues.

So much of the current social narrative is in fighting things when it takes so much more courage and effort to suffer in isolation.

Thank you so much for that comment, Joanne.

This week's episode was produced by Matthew Omar and me.

Edited by Colin Kish, digital shorts by Ariana Longley.

Camera [music] work by Max Tussy.

Teleprompting by Christy Mloud,

production support from Jonathan Hallowell and TVO's digital media services team.

Lori Fu is the executive producer of digital.

John Ferry is vice president programming and content.

And special thanks to our studio crew here at TVO.

Thanks so much for listening.