被遗弃的罕见病痛：埃勒斯-当洛综合征与加拿大医疗系统的隐形壁垒

Nam Kiwanuka: In late 2025, I posted this video of Sydney Gesualdi. Then, my inbox started filling up.

Sydney Gesualdi: The urgency, given my worsening neurological and physical condition, was very clearly stated on every single referral, and every single neurosurgeon said no.

Nam Kiwanuka: In the video, Sydney is talking about her struggles with Ontario's medical system. Sydney was in a car accident in 2023. She says the doctor initially told her she had tissue damage and whiplash, but she's never gotten better. Turns out something much bigger was happening. Sydney says doctors suspect she has Ehlers-Danlos syndrome, EDS, and craniocervical instability, CCI, a potentially debilitating condition affecting the connection between the skull and the upper cervical spine. The issue is Sydney says she can't get a neurosurgeon in Ontario to treat her. That story seemed to resonate with the audience, and many of you reached out. A lot of you said you were in the same boat and shared that you believed there was no surgeon in Canada able to provide the care you were seeking. So, we decided to look into it further. Surely there was a surgeon here that performed surgery on EDS patients. Turns out finding that answer is a lot more complicated than we thought. You're listening to an investigative episode of (MIS)Treated. I'm Nam Kiwanuka. When I first started reporting on EDS late last year, I didn't know anything about it. What I quickly learned? It's really complex. EDS is a group of connective tissue disorders that affects collagen. The most common type is hypermobile EDS, or hEDS. It impacts women more than men. Some researchers say hEDS has been overlooked in healthcare and research. We'll dig into that later. But for now, what you need to know is there are still questions around how the condition is diagnosed, treated, and even understood. Some experts argue the uncertainty has exposed systemic gaps in care, leaving patients to fend for themselves. That's why we travelled to Aurora, Ontario, earlier this year to learn what happened to Georgia Powers.

Nam Kiwanuka: Hi.

Karen Powers: Hi, Karen. Hi. I'm Nam. Hi. I'm Karen. Nice to meet you.

Nam Kiwanuka: Nice to meet you. Thanks so much for inviting us to your home. In 2023, Georgia called her mother from school with excruciating head pain, pain she's never recovered from. In fact, Georgia has only gotten worse. At just 20 years old, she's been bedridden for more than three years. Georgia's mother, Karen, has had to stay home to be her full-time caregiver. Georgia has a hard time speaking now, so Karen is speaking for her.

Karen Powers: It was a rough year, and she has a lot of health issues. So, she was having a lot of joint problems, and joint pain, and difficulty walking. She had extreme fatigue. This was part of her underlying condition of Ehlers-Danlos syndrome. So, she called me from school, and she was crying, and she said, "Mom, my head hurts so much. Like, it's not-- it's not, like, normal. And I can't see very well out the sides, my vision's blurry. And I'm so nauseous and so dizzy that I can't walk. Can you come pick me up?" So, I picked her up from school. Like, this wasn't abnormal to get a call from her, but this was different. So, I picked her up from school that day, and that was her last day of school.

Nam Kiwanuka: Georgia was only sixteen years old then. Should we go up or...?

Karen Powers: Yeah.

Nam Kiwanuka: Karen offers to introduce me to Georgia. She takes me to the second floor where Georgia's room is. This is Georgia's room. Just going to wait to see if Karen says it's okay, we can go say hi to Georgia quickly.

Georgia Powers: Yeah, come on in.

Nam Kiwanuka: The lights are out. Karen tells me that's because too much light increases Georgia's pain. So, this is Georgia stays in this bed, in this room for...?

Karen Powers: She's been here since May 1st, 2023. She can't do anything; she's completely bedridden. She has to be flat at all times because her head pain sitting up is absolutely excruciating.

Nam Kiwanuka: Um... Georgia, it's really nice to meet you. How are you feeling today? Fine? What's it like for her when she goes to the hospital? How are doctors with her?

Karen Powers: So, we don't have that many medical appointments anymore because there is nobody who will take her on as a patient for the conditions that she has, except for recently at Sunnybrook now because she has been diagnosed with spinal fluid leaks.

Nam Kiwanuka: Georgia, thanks for letting us come into your space. Really appreciate it. It was really nice to meet you. Okay? Take good care. Over the years, Georgia has been diagnosed with a long list of conditions. Just to name a few: postural orthostatic tachycardia syndrome, POTS, hEDS, and CCI. This is not uncommon with EDS patients. Many are known to suffer from a wide range of coexisting conditions, from headaches and migraines to serious immune system disorders, like mast cell activation. Some experts suggest that's because connective tissue is found throughout the entire body. If that fails, other functions in the body do, too.

Dr. Sarah Cohen Solomon: So, consider it the glue that holds your body together and is involved in signalling, processing, protecting your body from the outside world, things like that.

Nam Kiwanuka: To get the ins and outs of this disorder, we reached out to Dr. Sarah Cohen Solomon. She's a paediatric specialist in hEDS. She's also an assistant professor at the University of Virginia and practices at UVA Health EDS and Hypermobility Disorder Centre. So, Dr. Cohen Solomon has seen firsthand how the complexity of EDS can make it harder for patients to get help.

Dr. Sarah Cohen Solomon: So, our patients end up with a laundry list of problems, if you will. And clinicians will look at that laundry list and say, "Oh my goodness, you are too complicated. There's all this going on." And rather than look into whether there's a connection between these conditions, the knee-jerk reaction is to say, "It must be all in your head," because of how much is going on, and that is absolutely detrimental to every single patient who's ever experienced that.

Nam Kiwanuka: According to one study published last year in the Journal of Clinical Medicine, participants with hEDS reported an average of 24 other health conditions, and it took, on average, about 22 years to get diagnosed. Experts say one reason for delays is the lack of education and awareness of EDS within the medical community. Doctors can use diagnostic criteria released in 2017 to help identify the condition and determine which subtype a person may have. But the criteria has drawn some criticism, especially for hEDS.

Dr. Sarah Cohen Solomon: We have very clear criteria as they exist right now. Now, most of us agree that it's definitely time for an update on those criteria. Hopefully, that'll be out at the end of this year. That having been said, in 2017, for adults, there are clear criteria for diagnosis, and part of the reason for creating that list of criteria was to make it easier for non-specialists to do the diagnosis. Is it perfect? No. Are we working on it? Absolutely. But at this time, the real barrier that I see is lack of awareness and unwillingness to take that step, unfortunately.

Dr. Danny Mansour: It has nothing to do with disease-modifying treatment. It has everything to do with just symptom management.

Nam Kiwanuka: That's Dr. Danny Mansour. He's a neurologist based in Oakville, Ontario. Dr. Mansour is not an EDS specialist, but he has a subspecialty in headache medicine, so he treats EDS patients. Dr. Mansour is not a big fan of the hEDS criteria. He says it's an imperfect test for a condition he thinks is not well-defined.

Dr. Danny Mansour: You run into these grey areas all the time. And so, people are given labels. They seek labels because it's just more reassuring that folks know what they have. At the end of the day, it doesn't result in any treatment changes because we don't really know what we're treating.

Nam Kiwanuka: Conflicting views over the criteria, along with scepticism about the condition among some healthcare professionals, may have serious trickle-down effects on people seeking care. And the patients we spoke to raised similar concerns. Some said they were given an EDS diagnosis by one doctor only to have it reversed by another, while others were told they were simply making things up.

Tiffany Felkai: It was challenging because I was experiencing symptoms that were not being recognized within our existing medical system.

Nam Kiwanuka: That certainly appears to be the case for Tiffany Felkai, who says she's had to fight for years to get her symptoms taken seriously. We met up with Tiffany in Toronto at the TVO studio in December 2025. Tiffany told me she needs spine surgery, but there's no one in Canada to do the surgery. As a result, she says she's being left to suffer. For Tiffany, the journey with EDS started in early childhood. She says she got migraines, then she began throwing out her back and partially dislocating her jaw. So, when did you get diagnosed for Ehlers-Danlos syndrome?

Tiffany Felkai: I was diagnosed by a neurologist who had been monitoring me for quite a while. We had done extensive imaging, and so he actually brought out the criteria form for hypermobile-type Ehlers-Danlos. I didn't know what it was at the time. I didn't even know how to spell it or say it, so I didn't know what I was being assessed for, but I met the criteria, and we had kind of like a working diagnosis.

Nam Kiwanuka: Tiffany's health continued to decline, but she says she managed to get by with day-to-day living until a fall completely changed her life. So, 2017, can you tell us what happened?

Tiffany Felkai: I slipped, and I fell. I developed minor injuries, that was an annular tear in my spine, a tear in my hip, and a tear in my shoulder. Nothing that could really describe why my body went into this state of shock or profound weakness. And I went from using a walker, to a wheelchair, to an electric wheelchair within eight months.

Nam Kiwanuka: What did you feel during that?

Tiffany Felkai: There was tremendous distress, to be completely honest with you. I would... go to a doctor's appointment where they would essentially tell me that my conditions do not align with any medical diagnoses. And then, I would leave that appointment, and sometimes, I would be really just upset and broken. But other times, and this is painful to reflect on, but I would say, "Okay, I believe them." And I would force myself, begrudgingly-- like, literally get all the energy in my body and force myself to take those steps or to stand or do what they told me that I could do that I knew that I couldn't. And I would hurt myself, and I would cry, and I would still push and push, and try to do what the doctors told me that I should be able to do, but I couldn't.

Nam Kiwanuka: So, you're fighting with your body. What are you telling yourself mentally?

Tiffany Felkai: I'm telling myself exactly what the doctors are telling me: "There is no medical basis. There is no diagnosis for this. Your symptoms don't make sense with your imaging." And that's just repeating in my head over and over again, while I'm forcing my body to work in ways that it could not.

Nam Kiwanuka: It can be one of the pitfalls of medicine: the people who are supposed to help you also, sometimes, don't believe you. A 2025 study, which reviewed the past medical records of 429 patients with hEDS, found that about 94% had been misdiagnosed with psychiatric illnesses. Some were told they were seeking attention or their symptoms were in their head. Dr. Mansour weighs in.

Dr. Danny Mansour: Here's a perspective on EDS patients, EDS, quote-unquote, meaning this hypermobile connective tissue disorder spectrum of patients, and how it's been perceived: it's almost an auto-stigma whenever you see it on their past medical history. A lot of these patients get labelled as psychosomatic, or, you know, let's say, functional neurological disorder, they call it. Primarily because the physicians who are labelling them as such don't understand the condition well, and so it's almost like an egocentric response, where it's like, "I don't know what it is, so it must be your fault, and I can't figure it out, so it makes me more comfortable if I label it with something and send you home." And then, that gets perpetuated, and these patients don't receive the care that they need. There's even literature now showing that, if you have biased language in a medical note, that that gets propagated throughout their medical record. So, you could have someone who said something, says, "Ah, you know, I think this person is making it up" or "I have suspicions" or whatever, five years ago, that note can still be propagated to a note that you see now. And even if we don't think it, if I've read a note from five years ago that says that, I go in with a bias. So, we have to be really, really careful about what we teach, what we are willing to learn, and how we look at records.

Nam Kiwanuka: Eventually, Tiffany was forced to look elsewhere for support. After a series of twists and turns, including a consultation with a surgeon in the United States, Tiffany says she was diagnosed with CCI and found a Canadian neurosurgeon willing to accept her case. This surgeon wrote she needed spine surgery, an occipitocervical fusion, to be exact. That's basically a procedure that fuses the skull to the upper spine. Problem was, Tiffany's neurosurgeon wouldn't be doing it. Tiffany showed us some of her documents, including a letter from her neurosurgeon. It said the surgery was, quote, "To the best of my knowledge, unfortunately, not performed within Ontario," meaning she would likely have to leave the province, possibly Canada, to get the surgery done. You have a doctor who has said, a neurosurgeon, who has said, "You need to leave here to have this very essential surgery." Why haven't you had surgery?

Tiffany Felkai: So, what he offered was to submit an out-of-country application through the Ministry of Health, which is the first time I learned of that program. So, it's the OOC program, and he actually requested the surgery, which is occipitocervical fusion surgery for an Ehlers-Danlos patient.

Nam Kiwanuka: Before we get into what happened next, there's important context to explain around this type of surgery. Recommending a procedure like the one Tiffany needs is a big deal within the EDS community. That's because it remains an area of medical uncertainty and ongoing research. The issue isn't that the surgery is experimental. Some specialists say there are currently no validated diagnostic criteria for identifying CCI in people with EDS. That means doctors can't reliably determine which patients have clinically significant instability that would benefit from surgery and which are experiencing the hypermobility that naturally occurs with the condition. There is also a lack of consensus about the long-term outcomes of the surgery. So, the procedure isn't widely accepted as a standard treatment, at least not yet. Dr. Mansour says more study is needed.

Dr. Danny Mansour: Are their symptoms actually related to that or not? And we don't have any data to suggest that it is related to any of their symptoms. So, we don't really know why or how CCI is related to EDS. And so, we don't really have tests and treatments to sort of offer patients with a high degree of certainty and safety, and that's the big problem.

Nam Kiwanuka: We found a handful of surgeons internationally who performed this procedure and others on EDS patients. Many of them were in the US, but that creates another hurdle: the cost. There is an avenue for Ontarians to get healthcare outside of Canada under Ontario's health insurance plan, OHIP. A government-funded program, people can apply for out-of-country funding for health services, but in these circumstances, they have to get it pre-approved. There are different requirements patients must meet to get the green light. If they're not approved, patients can pay out of pocket, but in this situation, the surgery is really expensive. For Tiffany, accessing the surgery meant seeking approval through the out-of-country process.

Tiffany Felkai: The Ministry of Health really, really quickly came back with a letter, um... stating that they do not approve.

Nam Kiwanuka: Karen says a request for out-of-country funding was also submitted for Georgia.

Karen Powers: When you apply for out-of-country funding, one of the stipulations is that an equal to the surgery you're applying for has to, I don't know, either apply or endorse the surgery. So, we're applying for a neurosurgery by a neurosurgeon, and so, therefore, we're supposed to have a neurosurgeon do the application.

Nam Kiwanuka: Georgia needs surgery to untether her lumbar spinal cord, but she can't find anyone in Canada willing to do that tethered cord surgery on her, even though, technically, there are surgeons here able to perform it. Karen says Georgia has been referred to a number of different surgeons, but no one has been willing to accept her case, so they are stuck. As a result, Karen felt forced to look south of the border. That's why they applied for funding. In order to meet one of the criteria, Georgia needs an equivalent specialist, in this case, a neurosurgeon, to write to the Ministry of Health, confirming things like why the treatment is medically necessary and why it should be provided outside of Canada. But here's the catch-22: Georgia can't get the right type of specialist to write the letter because she can't get them to accept her referral. So, Karen believes it's impossible for Georgia to ever meet this requirement. It's just one of the many bureaucratic traps Georgia and other EDS patients can find themselves in.

Dr. Danny Mansour: A surgeon's mindset is such that if I can't operate, I don't really have time to do anything else, right? So, if they're going to see the patient, they'll spend five, ten minutes with them, and they want to sort of get to the operating suite because the revenue model is also incentivized by that, too.

Karen Powers: When a neurosurgeon won't accept you as a patient, it's impossible to fulfil that requirement. So, in the application, it was stated that we've had denials, and we even had a letter from St. Michael's stating that there is nobody to refer her to, and how much she's declined, and how desperately she needs the surgery. So, the application was submitted and we thought, "Okay, they're probably-- they're probably going to deny this, but we're going to try anyways because we just have to try."

Nam Kiwanuka: And Karen was right: the Ontario Ministry of Health denied Georgia's application too. To make matters worse, Georgia has developed other serious issues that require attention. One of them is a condition where the pressure of the fluid surrounding the brain becomes abnormally high, causing symptoms that can mimic a brain tumour, even though no tumour is there. This has become another roadblock because some of Georgia's doctors say they need to wait until that problem is resolved before moving forward with other solutions for some of her latest set of medical issues. Karen says Georgia's current treating physicians haven't provided any names of specialists who can help. Tiffany is facing a similar fate. Her document says she's also showing signs of increased pressure around her brain. But one of her doctors wrote Tiffany can't have a procedure to relieve it until her craniocervical instability is dealt with. Both are left in limbo. Here's Dr. Cohen Solomon again.

Dr. Sarah Cohen Solomon: When something is not available in Canada, there needs to be guideposts, a pipeline, something available, where they can get funding to do what is necessary out of country. So, we can't have a gatekeeping effect where, just because clinicians in one country are unfamiliar or inexperienced or even just uncomfortable, that that means that the patient is languishing. I have patients who've come to me from not just Canada, but other countries, for example, this is horrible, and I can almost never speak of it without becoming distressed myself, who are so limited in what their options are that they are considering medically assisted suicide as a result of a lack of care. And that is a solvable problem. And the idea that we are leaving these patients to say that death is a better option for them because of how much they're suffering and how many red-tape steps there are to reach care, if at all, it's really unacceptable.

Nam Kiwanuka: There has been at least one case in Canada where a patient who said they had EDS was fully approved for medical assistance in dying, or MAID, and ended her life that way. Jennifer Hatch told CTV News her story in 2022.

Reporter: Her disability, lack of treatment, and poverty prompted her medically assisted death application.

Jennifer Hatch: If I'm not able to access healthcare, am I then able to access deathcare?

Nam Kiwanuka: It was reported, quote, "Jennifer hoped to get access to palliative care or other supports in the process." She shared with CTV News that, although her suffering qualified her for MAID, no additional resources were provided. Jennifer died at age 37. To be frank, the Ontario government is well aware of the plight of EDS patients. Behind the scenes, there are patients, families, and advocates working very hard to get the government's attention. Recently, in April 2026, an EDS and CCI Advocacy Day was held at the Ontario Legislative Building, commonly known as Queen's Park in Toronto.

Advocate: That is why one of the key asks of today is clear: to establish a pathway for out-of-country care for patients with EDS and CCI who require timely neurosurgical intervention.

Nam Kiwanuka: The Minister of Health, Sylvia Jones, did not attend, but the parliamentary assistant to the minister did. Events like this have happened before. One example, in 2015, two young women with EDS and their families held a news conference at Queen's Park. They shared how they were being pushed into financial ruin, covering the costs for treatments and surgeries in the US that weren't available at home.

Patient Parent: I've paid taxes for more than 30 years, and yet, I have no choice but to leave the province to get the necessary healthcare for my daughter, Denise, to have a good quality of life. Isn't everyone entitled to a good quality of life in Canada?

Denise: Before my surgery in the US, I was in a wheelchair, partially blinded in my left eye, and many other complications. But after the surgery, I was able to walk again.

Nam Kiwanuka: They said OHIP didn't cover the women's surgeries in the US. The family said officials told them there are doctors who can treat EDS in Canada, but they dispute that.

Patient Parent: Once again, I ask the health minister: please provide the names of Ontario neurosurgeons who have experience with EDS patients and will perform the necessary surgeries with equivalent or identical skills to the EDS neurosurgeon specialists in the United States.

Nam Kiwanuka: Eventually, the provincial government did respond. Dr. Eric Hoskins, the Minister of Health during that period, announced the government was going to set up a joint EDS clinic, one for adults and one for kids, to help improve access to specialized care and treatment. In 2017, the Good Hope Ehlers-Danlos Syndrome Clinic opened. It is run by the University Health Network, UHN. SickKids Hospital is responsible for the children's clinic. Both are in Toronto. There are mixed reviews about the Good Hope EDS Clinic, some have good experiences, others bad. There are long wait times to get in, the website says 12 to 18 months, and some patients say there weren't many treatment options offered.

MPP Theresa Armstrong: Speaker, in 2023, the Minister of Health...

Nam Kiwanuka: But the most scathing claim came from Member of Provincial Parliament Theresa Armstrong in the spring of 2026. She alleged there was no roadmap for these patients to access neurosurgical care in Ontario, not even through Good Hope, a concern Armstrong brought up during question period.

MPP Theresa Armstrong: Last year, the head of Good Hope's EDS clinic confirmed that there is currently no neurosurgeon in Ontario accepting EDS and CCI patients and no established referral pathway. However, treatment is available at specialized centres in the United States. But since 2018, every single out-of-country prior approval application for EDS-related CCI has been denied by the ministry. Where does the minister expect patients to go to access care if experts are confirming it is not available in this province?

Nam Kiwanuka: We reached out to UHN to request an interview with the head of the Good Hope EDS Clinic to get his side of the story. We also wanted to learn more about the clinic's neurosurgical referral pathway for patients, and, more importantly, the names of neurosurgeons any patients had been referred to. The interview was declined, and instead, a PR person provided a statement on behalf of the director of the clinic. It said, in part, "The claim attributed to the head of the Good Hope Ehlers-Danlos Syndrome Clinic is incorrect. The clinic has referred a total of nine patients for neurosurgical assessment when clinically appropriate. For privacy and confidentiality reasons, we do not publicly identify individual physicians involved in patient referrals. Following specialist evaluation, none of the patients referred were determined to be candidates for surgery." We followed up again, asking if it was a legislative or company policy not to release the surgeons' names. We also wanted to know the last time the clinic made a neurosurgical referral. No response to those questions. We asked at least three times, but UHN's media team never provided those answers. If a major hospital network wouldn't give us the name of a neurosurgeon, maybe Ontario's Minister of Health would, especially since some of the out-of-country funding denial letters we've seen say the identical or equivalent service is performed in Ontario. So, we reached out for an interview, but the Minister also declined our request. Instead, the Minister's spokesperson came back and asked if we had any specific questions in lieu of an interview, and we did, 14 of them, including how the ministry verifies that EDS and CCI patients are receiving the neurosurgical care they need, and how the ministry evaluates the Good Hope EDS Clinic. The spokesperson got back to us later that day. But rather than answering our questions directly, she sent us a statement that partially read, "The Ontario government has increased dedicated funding for Ehlers-Danlos syndrome, EDS, twice since 2023. The decision for a necessary outside-of-country, OOC, procedure is a clinical decision determined by an Ontario physician. The Ministry of Health does not direct individual patient care." It went on to say, "All applications are reviewed on a case-by-case basis against the regulatory criteria, and only applications that meet all of the regulatory criteria are eligible for funding." But there was nothing in the statement that gave us a better sense of who is providing this neurosurgical care in Ontario or how patients could access it.

Karen Powers: It seems as if, like EDS and CCI, there's some kind of, "We don't talk about that." They're known as complex patients, and it makes them more difficult patients to deal with. And the CCI, we know that there's nobody treating it. So, how do I have a discussion with a doctor about something that we can't get treated? But you can't talk about the CCI. I'm afraid if I bring it up that... they won't want to deal with her as a patient, and I-I need them to treat what they can treat. So, I definitely feel like... you become a taboo patient.

Nam Kiwanuka: It is, in part, what's driving Karen to the US. She's been talking with a neurosurgeon in New York who specializes in CCI and treats EDS-related neurological conditions. He suspects Georgia will also need a skull-to-upper-spine fusion surgery, much like Tiffany. If this is the case, it will come at a great expense to Karen and Georgia's family, so Karen has been fundraising. She says they're not going to put in another out-of-country request for this surgery. She believes the answer will be no. How do you process that as a parent?

Karen Powers: (Sighing) At this point... you kind of always hope. You hope someone will see... A young girl, do the right thing. But then, because you've been through so much, you know that nobody's going to do it. But you still hope. So... you just don't give up.

Nam Kiwanuka: Since our interview with Karen Powers, multiple donors raised funds to help Jeorgia seek surgical treatment in the U.S. We wish her and her family well. This was (MIS)Treated. Thanks for listening. You can follow our show wherever you get your podcasts, so that you can get notified each time a new episode is available. This episode was produced by Krisha Collier; video editing by Colin Kisch and Matthew O'Mara; camera by Max Stussi; motion graphics by Ayush Madhamshettiwar; production support by TVO's digital media team; and our studio interviews and links by the studio team. Laurie Few is Executive Producer of Digital at TVO. Vanessa Case is Vice President of Media for TVO. I'm Nam Kiwanuka. Thank you so much for listening.