Listen to the full episode here:
Cassandra
You’re listening to the EDS Unplugged podcast brought to you by Chronic Pain Partners, a non profit supporting the Ehlers-Danlos Syndrome community.
Marcia
Welcome back to EDS Unplugged. I’m Marcia Brock.
Cassandra
And I’m Cassandra A Campbell.
Marcia
Today we are excited to be joined by Donna Sullivan, advocate and filmmaker behind the powerful documentary Complicated.
Cassandra
Donna’s work shines a light on the lived experiences of those living with EDS and chronic pain, especially children. And she’s using film as a tool for empathy and understanding. Donna, welcome to EDS Unplugged.
Donna
Thank you so much for having me. I’m really excited to be here today.
Marcia
How are you doing today?
Donna
You know, I’m doing okay. As a mum of three kids that have Ehlers- Danlos, you know, I’m kind of living the dream. Dealing with a lot of medical stuff behind the scenes, but doing okay. Thanks for asking. How about the two of you?
Marcia
A bit hot and flustered today. And what about you, Cassandra?
Cassandra
Tired. Just getting over a neck flare up. You know how it goes.
Donna
Unfortunately, we all know how it goes, right? That’s part of living this life with Ehlers-Danlos.
Cassandra
Absolutely.
Marcia
For our listeners who might be new to your work, can you tell us a bit about yourself and what first drew you to advocacy?
Donna
Sure. So, as I shared, I’m the mum of three children who have Ehlers- Danlos syndrome. Our journey began back in 2011 at a time when nobody really knew anything about the condition, let alone how to spell it. So, unfortunately, as my children started to have more serious problems, kind of accessing appropriate healthcare and getting the care they needed, we kind of became that family where everything was going wrong. Surgeries were having surprise outcomes. There were a lot of things happening that just weren’t expected and weren’t really well understood. And I was really fortunate at that time to meet a group of other moms who also had children who had had similar experiences at a paediatric pain clinic. I live outside of Boston in the United States, and so I was very grateful to meet those moms who could kind of relate to, you know, what was happening with my children, with them. That’s kind of how I started my advocacy. It was really just trying to help other families. You know, you would meet other people that would say, you know, I did this and this happened. My child, you know, is having problems with fainting, my child’s having problems with these rashes and nobody understands them.
Donna
And we really quickly started to see patterns and recognised that there was something bigger going on and that there did seem to be some kind of connection. But, you know, at the time nobody really understood what it was. So this group of women had organised and called themselves The Coalition Against Paediatric Pain, or TCAPP. And they basically started by having yard sales and trying to raise money to create awareness around this condition called Ehlers-Danlos Syndrome.
Donna
They were able to find physicians who had a little bit of knowledge about it, but more importantly were interested in it and kind of saw some of these things that were happening to these children, you know, particularly in these pain programmes. So they would have yard sales and they would raise money and they’d bring these physicians in for think tank and they would talk about what the condition is, what the research is. And many of these physicians went on to become pioneers in the Ehlers-Danlos space. Physicians like Dr. Frank Amano, Dr. Pradeep Chopra, Dr. Ann Maitland were really instrumental back in 2011-2012 to really start the ball rolling on recognising that Ehlers- Danlos and connective tissue can be very problematic in clinical settings.
Cassandra
Absolutely. Obviously you’ve had an incredible journey with this and having three children with EDS. How did this all lead to creating complicated?
Donna
So that’s the question. So when I say I have three kids with Ehlers Danlos, I downplay my own story a little bit. Not intentionally, but just as many people can relate to, most people with Ehlers-Danlos have very long, hard to believe stories about their diagnostic journey. You know, my children had very serious outcomes after very serious surgeries. It took multiple paediatric hospitals, a lot of travel, a lot of, just struggle, to get my children well. My son was nine years in a wheelchair, my daughter had very significant spinal surgeries and physicians just didn’t know. It’s not that they were nefarious, but they just didn’t know how to help us. And they would kind of push us away or in some cases, you know, we can’t help you, and just decided that maybe we were malingering or it was psychological. And I started to see very clearly these real obstacles that not only were my own family running into, but other patients that were finding our group cause we started to get inundated, like families and parents just started finding us through the Internet. And our support group grew but not only did I realise that it was us as patients that were struggling, it was really the physicians who treat us.
Donna
Because a physician would start to understand or get ideas on how to help people with Ehlers-Danlos and they’d be completely flooded and then they would get overwhelmed. And then these offices a lot of times might either shut down or they would be within an institution. And this is a problem here in the US and others where the institutions would say, okay, we’re going to take a break from all these complex Ehlers-Danlos cases. And we had families getting letters. We don’t treat Ehlers-Danlos anymore. There’s not many conditions where you can have very serious symptoms and be told that your condition is not being treated. But that was part of what we were seeing happening to the community. The other thing that happened was the society had come out with some really well meaning criteria to try to help people, but didn’t really understand and talk about all the different organ systems that can be impacted. And there was this real clinical confusion. You know, what is Ehlers-Danlos? Is any of this stuff connected? And for the most part it created this opportunity for physicians to kind of say, you know what, this is too confusing.
Donna
I’m not going to deal with it at all. So then what happens to people? Well, I can tell you what happens to people because we were watching it, especially children; very bad things. And we started seeing more and more children that were suffering with very serious pain, very serious conditions, and weren’t really being given the support or the attention because there just was not enough known. We started seeing families having this phenomenon of being investigated by Child Protective Services and recognised really early on that part of the reason this was happening was because the clinicians just didn’t see what was in front of them. They didn’t understand what connective tissue Ehlers-Danlos was. And again, this whole film is not anti-medicine. It’s nobody’s fault. It’s just how it was.
Marcia
Was this the reason why you wanted to film it and document it?
Donna
In all honesty, yes. We were getting more and more cases. We were seeing more and more children sick and even passing away from complications. You know, Ehlers-Danlos is not fatal, but complications from some of the other conditions associated with it can be. We had one family in particular who had come to us for help. Their story was very well documented in a film called Take Care of Maya, which came out on Netflix. Beata Kowalski had come to us for help. Her child was taken. When the children are taken into custody, a lot of times they’ll de-medicalise them because they’re trying to understand how much of their illness is real and if the treatment has been appropriate. But what happens is a lot of times these children suffer greatly. And Maya was suffering and in a very difficult moment, her mother decided to take her life. So I found out that this had happened when I was an in-patient and I was devastated and just called my mum groups and said we got to do something, we got to make a film. I had a background in film. So we put together a film treatment and then we started looking at who can help us tell the story?
Donna
We really need a director who’s going to understand medical controversy and empathy and be willing to believe that these experiences are happening in these very high esteemed institutions. And we got really lucky. We found this director, Andrew Abrahams, who had done a film called Under Our Skin. It had been nominated for an Oscar, it was shortlisted and it really got to the heart of what happens to people, what happens to human beings when medicine can’t help them and what happens to physicians when there’s medical controversy or disagreement over what is being evaluated. So he was really the right guy. So we called him, we pitched him. It took a little while to get him on board and I’m just so grateful every day that he took on this project because he really dove in.
Cassandra
Excellent.
Marcia
What inspired the name?
Donna
The film actually named itself. Funny enough, when I wrote the original treatment, and this was back in 2017, we kept thinking about how the disease itself is complex, but the problem within medicine is really complicated and the problem in child protection is even more complicated in the law. That it just kind of seemed like the right name. So funny enough, that’s what we titled it. And when Andrew got it and he agreed to take the project, he actually said, I’m very interested in the project, I’ll do it. But I really hate the name. We have to come up with something else. And I was like, okay, I’ve tried, but that’s all I can come up with. And as we were doing our filming and our interviews, every interview the word would come up. It’s complicated, complicated, complicated. And we tried and we kept coming up with name after name after name. And probably about a year and a half ago he kind of conceded and he’s like, there’s no other name. And I’m like, I know, I keep trying and there’s no other name. So the film kind of named itself.
Cassandra
Yeah, I think that’s really fitting actually, because living with EDS is complicated. The amount of symptoms and associated conditions. It’s really complicated. I know for me, when I try to explain to people about EDS and the symptoms, they just look at me dumbfounded like, huh.
Marcia
Yeah.
Cassandra
And I know for myself, I’m not even at the other end of the scale in regards to symptoms and associated conditions. I may be in the middle. And it just baffles people, especially when they see you and you sort of look “normal”. They see you on the good days. So for them, it’s like there’s no way she could be experiencing all of that.
Donna
Right?
Cassandra
Yeah, it’s the perfect name, I think.
Marcia
What would you say are some of the biggest challenges for children living with EDS and complex pain faced every day?
Donna
That’s a really great question. And unfortunately, the challenges come for kids on many different fronts. Right. So first of all, they have managing their own health depending on what it is that they’re living with. You know, you have that daily struggle of you wake up in your body and you’re feeling pain, you’re feeling fatigue, you have the uncertainty of what’s going to happen today. Is something going to flare? Am I going to have a subluxation? And for so many of these children, I joke and say it’s kind of like whack-a-mole. You know, you sometimes get one problem solved and then another problem comes up. And I think there’s a real lack of appreciation for what that burden is, not only on the children, but the families, because you have parents that have to go to work, you have children that are expected to go to school. And when you have this kind of uncertainty with your health, Ehlers-Danlos is not like a child that has cancer or a more notable condition where they might get a firm diagnosis. Right. First of all, very rarely do we get that. The average diagnostic time can be 8 to 10 years, which can be the lifetime for a child.
Donna
So, you know, they don’t even get that opportunity. Unfortunately, one of the biggest challenges with these kids, I think, happens internally as they try to come to terms and they try to understand, why do I feel so badly? Why can’t I keep up with my peers? Or maybe why do I keep getting injured on the sports field? I think that’s a really big problem. I think within the school system, public education especially is not really set up for children that have chronic illness where they might be in and out. So now they have that academic pressure of being out, in society, for whatever reason.
Donna
Invisible illness is a whole other challenge. People have that tendency to say, well, you look fine or you’re young, you can’t be hurting that badly. All those factors really play in at a time when these kids are trying to just develop emotionally and grow. And, you know, to be quite honest, it always dumbfounded me how you can walk into these hospitals and see all this kind of effort towards emotional development, emotional support of children. And yet these Ehlers- Danlors children are kind of marginalised because they walk into these institutions and can sometimes have very different experiences where their pain is discounted, their condition is not understood or well supported.
Donna
And what does that do? One of the things I would share a lot is we used to have to discharge from very serious spinal surgeries and other things where we weren’t getting better and would have to walk past the sign and it would say, “till every child is well”. And the other moms and I would joke and say, “every child, unless you have Ehlers- Danlos”. You’re kind of on your own. And that’s what it felt like. As a parent, you feel like you’re on your own. I have to figure out who is the doctor who’s going to look at my child.
Cassandra
Yeah, I hear that. I watched the documentary. Oh, my gosh. The range of emotions that I went through, from feeling really sad, empathy, sympathy, to just feeling angry at these doctors; some of the doctors and social services, it just infuriated me. But one of the things that really stood out for me was that as well as the physical and emotional trauma of living with the symptoms and not being believed is the additional trauma for the children whose parents were being accused and sometimes separated from them. And that’s just so much for children and their families to deal with.
Cassandra
I imagine that filming a documentary and interviewing people and everything else must have been really emotional. Can you share one of those powerful or unexpected moments that stayed with you?
Donna
There were a lot of moments that stayed with us. And I think part of it is because when we started this film, our goal and our intention was to really give these young people a voice and show that even though they were being treated as if they were psychological and weak, that they were actually strong and vibrant and we really wanted to show them coming of age. We did not anticipate…there was no way we could see what happened. And as a spoiler alert, we did lose some of the children that are featured in the film. And I think for us, making this film was devastating. I mean, it really was. And, you know, I give so much credit to these families and these children, because let’s be honest, it’s one thing to say, okay, I want to share my story in a documentary. It’s another to say, I am in so much pain today and I am so afraid today. Sure. Bring in a camera, allow the camera in. And yet they did. So, you know, I’m grateful and incredibly proud of these kids. But I think Karen in particular really took some twists and turns in her storyline.
Donna
And I think when she was put in hospice for the second time and we realised, you know, this really could be the end, that was just devastating.
Cassandra
Yeah, I can imagine. Like you were saying, when we film for EDS Unplugged, particularly in the beginning, we would never film us having a bad day. Letting people in at those times we found really challenging, didn’t we, Marcia?
Marcia
Definitely. Even with the film, I’ve gone through some of the parent child separation and the thought of that being documented and having to watch that back, that triggers me alone, just thinking about it. Because it’s not just a USA problem, we have that happening over here. So, yeah, me watching the film, I’m glad I was warned. It’s a horrific problem that does happen over here too. I’m glad the film’s out, but I don’t think I could have been those parents at that time going through it myself because, yeah, we barely share the bad side with EDS Unplugged anyway
Donna
Right. So first of all, you’re raising a really good point. This is a global problem. And some countries have really aggressive child protection processes. So some countries, you know, the children are taken even sooner. I will share, for the last 10 years, because of our nonprofit doing this work, we kind of became this place where families would find us who are being investigated. So we were able to develop a network of physicians and lawyers and families and support people to help these families because the trauma that they endure cannot be underestimated. And as you’re saying, Marcia, and I am sorry that you had to deal with this, and I say this all the time to moms. You are not alone. You feel alone, you feel isolated. A lot of these women, you know, and this really is partially a problem of misogyny. I mean, let’s be honest, over 60% of caregivers are women. They’re not really accusing the fathers at the rates, they’re accusing the moms. And when you look at why these mothers get accused, unfortunately, it’s because the definition of a medical child abuser is very similar to the characteristics of a rare disease parent.
Donna
So you have these mothers who are so dedicated to their children, who are trying to find a physician to help them, and now they’re being told, oh, you’re doctor shopping. They’ve been in settings for so long that they become good advocates and they learn the language, thinking it will help their children. And then they get told, oh, you’re comfortable in medical settings, you like being here. And so many women, like, we go through the records, the medical records, you would be amazed what goes into these records from physicians who are not psychologically trained and they’re not following DSM criteria, but they make all these assumptions and that’s where you see the bias, that’s where you see the narrative that kind of comes together in these cases. And so many of these women, when it happens, they retreat in shame. There’s a stigma, it changes their relationship with their children because sometimes the children are like, mum, is this true?
Cassandra
Right.
Donna
The kids don’t know what to make of it. And I’ll be honest, it’s dangerous. I mean, I have a case right now. I’m unfortunately getting multiple cases a week because of the film. Right. People are finding us, which is great because we want to help. But I have a case right now. The child has very serious mast cell anaphylaxis, Mast cell Activation, and just got put, you know, five years old, put in a foster care system. And the mother’s praying that that mother who’s taking care of the child will recognise the seriousness of anaphylaxis. There’s just so much stress.
Marcia
Definitely. If it wasn’t for an independent psychologist, I don’t think our case would have been looked at properly. There was a part in the film where I can remember they said that they didn’t believe the medical doctor who was giving them very true details and he was not believed. And I was like, I’ve had that. I’ve had our long term Great Ormond Street Hospital doctor been told that, oh no, this woman does have Munchausen by proxy. And the child doesn’t have EDS at all. I had to have an independent person be able to look at it. So that part of the film stood out for me. The whole film stood out for me. It’s definitely a problem.
Donna
It happens way more commonly than people think. And again, I’m so sorry for everything that you’ve been through. Because it’s not okay, right? None of this is okay. But we do see physicians who support these families sometimes have their own repercussions. They get challenged within their own institutions. They get sometimes run out of their hospitals. It’s a problem that I’m really hoping as the research continues and the understanding continues, which thankfully we’re in a great year because we’re getting there, we’ll get better. But the problem that you’re talking about too is within the legal system and the child protection system. A scene in the film where one of the physicians submits a report to explain the situation and it gets suppressed because someone decides it’s fraudulent. And we were very lucky to have captured that because unfortunately that happens also all the time and people don’t believe it. Child protection is the most important thing in the world. Nothing’s more important. But the legal system and the child protection systems, you know, are very overworked and a lot of their workers are not trained in rare disease, nor should they be, because they’re not physicians.
Donna
But unfortunately it kind of adds to the dysfunction of this complicated legal problem and complicated child protection problem.
Cassandra
Yeah, we know that this is a global issue and obviously I know what Marcia went through with her daughter and there’s been other people that I’ve seen on social media that have been through similar. But I was intrigued about the cases in the UK, so I asked ChatGPT about cases in the UK where parents were wrongly accused of abuse specifically, due to EDS, and it really struggled to find statistics on it. What it did say was that there were between 5 to 15 documented cases and up to 200 less-well-documented media reports, advocacy complaints and families who have told charities but whose cases never reach public judgement. I know that just this year on Instagram there was a few families that documented their experiences of their children, being separated from their children, regarding young people with myalgic encephalomyelitis, not being believed and mistreated and essentially accused of Munchausens. So we know that this is something that’s global, basically.
Donna
And it’s funny because that’s one of the other challenges, right. I actually did a presentation with Karen, one of the girls in the film for the Ehlers-Danlos Society probably about six years ago. And one of the questions was, how prevalent is the problem? And unfortunately the answer today is the same as it was back then. We really don’t know because there’s no global registry. And within each country child protection is not documenting these cases. They’re not documenting them as medical or over-medicalization abuse. And you know, I started thinking about like, well, how do you start to work on this issue? And I think that’s really where it starts. We really need to start tracking the data, but that’s not being done. So as a result, it’s very hard to quantify the problem. I can tell you when I show the film, I showed it at a medical conference and I had three or four women that work in the pharma industry come up to me and say, “this happened to me, this happened to me”. So I suspect as people start to become more vocal and awareness rises, we’re going to find out the numbers are surprising and much higher than I think the average person might expect.
Cassandra
So have you noticed any improvement at all in the healthcare system? And if so, over what time span?
Donna
So I can only speak for what we see here in the United States, and I think there’s absolutely been some improvements. People recognise what Ehlers-Danlos is. You can say it now and not have to spell it as much, which I think is a good sign. Unfortunately, they still don’t know what to do with a lot of the problems associated with Ehlers-Danlos. And Dysautonomia is a really great example for some of the other problems that people have, like Complex Regional Pain Syndrome. Unfortunately, there’s not really treatments yet, right. Or cures, and even clinical guidance is limited. So I think there is a general awareness that Ehlers-Danlos exists.
Donna
I will say there is still a percentage of providers who still are kind of dubious and can’t really believe this or don’t want to believe this. I’ve heard this because I work with a lot of physicians who will share stories within institutions, how there will be practitioners who are thinking, well, you know, Ehlers-Danlos, there’s a lot of hysterical people, they’re very overdramatic and, you know, unfortunately, there’s almost this, like, disease bias is the only word I can think of. And I think that’s something that people really need to be aware of, because we kind of had a perfect storm where you have someone who’s sick, who’s really fighting to get care, and in clinical settings, you know, they may be more aggressive, they may be taking up way more time and talking about problems outside the specialty then overwhelming physicians.
Donna
So, you know, maybe as a population we can overwhelm these systems. And I think that’s something that we kind of have to be aware of. But I think overall, you know, awareness is improving. There’s more of an interest in wanting to understand it and trying to find ways to help, but we’re so far from being there. I mean, as you know, I was just in the hospital with my daughter this week and she has severe problems right now with her dysautonomia and her heart rate is. She’s sitting there and she’s going 40 to 150. It’s kind of crazy. And not only did the emergency room not offer her fluids and we had to ask and ask and ask, which is like one of the number one things you do. But the attending at the end said, you know, I don’t really know a lot about this, but, you know, you might want to not go home and go to bed. You need to challenge your nervous system and maybe try exercises like burpees. I said, well, you know, you want her to lay on the ground and jump up and lay on the ground, like she’s going to pass out just sitting up, you know, it just surprised me because here I am walking out of the hospital thinking, you have some of the best researchers upstairs doing research.
Donna
You have an autonomic testing lab, and for some reason it has not made the clinical frontline here in the ER. So there’s a long way to go. Sadly, there’s still a long way to go, but we’re making progress.
Cassandra
I mean, that’s great, but I tell you, some of these physicians really infuriate me. And my thing is, I wish they could have, like, a bodysuit. You know, they have those pregnancy things that the dads can wear, so they get to experience a little bit of what it’s like to be pregnant and have contractions and stuff. I wish that there was some kind of suit like that where these physicians and these people who are making these decisions could put it on just for one day, one day alone, and then come back and tell people that they’re being hysterical and they’ve got Munchausens and all the rest of it, because I don’t think they’d survive a day, let alone a lifetime.
Donna
That would be amazing. That is such a great idea. I think you need to start to get to work on that.
Cassandra
Oh, gosh. Giving me work to do. Yeah. Laughing)
Donna
(laughing) Well, it would be like an EDS simulator right. Here, step in my body for a day and see how well you do.
Cassandra
Yeah, A day in the life of. Yeah. And then see what you’ve got to say. The words that I want to say right now, I can’t say. I’ve got to be professional here. (laughing)
Donna
I do call them WTF moments. I’m like, I have these WTF moments and you have to just recognise it for what it is. There’s no point in getting upset or angry, you just have to move on. But Yeah, I totally hear you.
Cassandra
So in light of all of that, what kind of systematic changes still need to happen so that parents with children with EDS and other complex conditions stop being wrongfully accused of child abuse?
Donna
That’s a great question. It’s kind of a complicated answer. But we really need to first of all be able to acknowledge this is a problem that exists. And I think that’s what we’re hoping the film can accomplish, because pretty much forever, nobody really wants to acknowledge that this exists. They know that families with rare diseases get caught in these allegations, but God forbid you make a mistake in a case of child abuse. There’s a lot of fear about wanting to address it. So now that we can acknowledge it exists, what do you do? Well, I think within hospital systems, we really need to look at the training for the child abuse physician. Right. What kind of training do they go through and how do we teach them more about the reality about Ehlers-Danlos. I think you have to look at other positions like the emergency room and the hospitals, because those tend to be kind of two areas that a lot of times these families will get flagged. So let’s work on training there and just really general disease awareness. There has to be better oversight, there has to be a better process so that when parents are accused, they have a right to a second opinion outside of the hospital that’s accusing them.
Donna
And in the United States, we’ve had two states now that have successfully passed legislation to allow that to happen. But to my knowledge, that’s not really happening anywhere else in the world that I’m aware of. So I think that’s another big part is really focusing on what are the rights of the parents to get another opinion from an outside source. And then I also think the third thing is really teaching families how to navigate healthcare. You know, healthcare is broken. Healthcare is very over specialised. So, you know, if you have a condition like Ehlers-Danlos, where you have to move across multiple specialties, really taking the time to support parents, support families and teach people how to navigate safely.
Marcia
From personal experience, everybody apologised after everything was found out to be true. But it took a lot of fighting on my part just for the truth to be heard. And the apology was so quick and quiet that it never balanced all the trauma that they put us through whatsoever.
Donna
And you’re very lucky that you got an apology because medicine is a no harm business, so very rarely will they acknowledge harm. So I think that’s extraordinary.
Marcia
It wasn’t in writing. It was very quick and brief from social services and the fact that it was outside of the court as well. So it wasn’t…it wasn’t very acknowledged on paperwork. But I did hear it for a brief moment in time.
Donna
Which I think means a lot. Right. You want to be validated…
Donna
No. I wanted it in writing, just like all of the accusations.
Donna
Well, that’s what you want. Right? Well, and let me ask you, because this is another important thing of the film. So how did that affect you the next day, when you now have to go back into other doctors with this kind of thing on your back?
Marcia
I completely removed myself from most of the NHS system and just went private, just stuck to our private people. I found it much simpler and less trauma.
Donna
A lot of families go that route. We’re seeing another trend, though, unfortunately, where a lot of the physicians who treat Ehlers-Danlos, because it’s so time consuming, are going into concierge medicine here in the United States, where they charge. And so the idea of going into private practice and seeing private physicians is definitely one of the things that can help families. But now that there’s becoming a cost associated with it, I’m kind of watching this closely to see how this works out for patients and for physicians.
Marcia
Yeah, we pay for any kind of treatment and learning how to manage and cope ourselves has been a massive factor. And we’ve got a few physios and stuff that we regularly see now. And, yeah, it’s out of pocket.
Cassandra
And that’s a big issue, because what I found speaking to people with EDS is that most people can’t afford to go private. Go private, have a consultation and spend all this money and still not come out with…i know there’s not a cure, but, you know, with solutions and things that actually help. So, yeah, you’re kind of stuck between a rock and a hard place because you could say, oh, yeah, well, I’m going to find the money. For some people it is a struggle and then still not get the help that you need.
Donna
Right.
Marcia
Definitely. Over here, a lot of surgery that I’ve personally seen just leads to more surgery and more surgery. Not real, any kind of recovery. I kind of withdrew myself from that side of it and withdrew my child. I refused any kind of surgery suggested just because the outcomes weren’t great. And everybody I know here that does don’t have great outcomes.
Donna
So that’s the whole context here within the film. Right. The question is what they call over medicalization. And I always say, you know, it’s not the parents that are deciding to do the surgery or try deciding to give the medicine. It’s the physicians. Right. So how are the parents being held responsible? But the point that you’re bringing up, Marcia, is also really important because not enough was known about recovery and what happens with these surgeries. And yet we have children like Karen in the film, who didn’t have a choice. You know, people will ask me, well, why did she have her fusion? Well, she had jugular compression. Her jugular vein was being compressed by her C1 instability. She didn’t have a choice. And you do see that within the tethered cord is another great example which my family was affected by. Sometimes you don’t have a choice with these surgeries. So it’s definitely a very difficult terrain to navigate. And everybody is so individual. Right. Some people, fortunately, can use manual energy and alignment and physical therapy and have really good outcomes. But then sometimes there’s people who have really bad Chiari or other comorbid problems that can’t.
Marcia
And they don’t do that surgery over here for the Chiari at all. They don’t do any fusion. Yeah. UK it’s not even on this, private or through the commercial. So that’s definitely something, because I understand. I’ve seen the surgery in America and I’ve seen how it can try and help, but they don’t even offer it here.
Cassandra
Yeah, I think there’s a lot they don’t offer here, actually.
Marcia
Yeah.
Donna
Right. Then the question is why? Right. In every. You’re not alone. I hear this from Germany and other countries. So then the question is, you know, why and what’s needed? I wish we had a magic wand and somebody could say with certainty, if this happens, this will help. And we just don’t have that. And I don’t know if we ever will. But it’s interesting that you have this condition that can be treated one way in one country and so dramatically different in the other. And we really need to study those and look at the outcomes and look at the quality of life and the longevity of these people.
Marcia
The healthcare system that you’re experiencing, have you noticed a time span of how it’s improved at all?
Donna
I think it’s definitely improved. Well, here in the United States, everything is up for grabs right now. There’s so much money that’s being cut, and we are having a real crisis in medicine with our healthcare workers being overworked and pretty much stressed to the brink. So it’s hard to say definitively where this is gonna go. I think I can tell you, the cut in funding is very worrisome to everybody here in the US, but like I said, I think clinical awareness is starting.
Donna
We were very fortunate this year. Dr. Norris from the Norris Lab shared with me that they were able to get three questions onto the medical boards that are Ehlers-Danlos related. So if there’s going to be a question about the condition, now, med students have to learn about it. I think that’s progress.
Cassandra
Yeah. That’s fantastic.
Marcia
Have you received support from other EDS organisations for this film?
Donna
When we started the film, we went to the Society and we went to a lot of organisations and said, we need to make this film. This is happening to our families. And at the time, they had so many other factors they were looking at, and I think they felt that this problem was a little bit fringe, possibly, or just maybe too controversial. So we did not get any financial support, which was part of the reason the film took seven years to get made. It was definitely an uphill climb. And I’ll tell you that I had people within nonprofits and other groups, right, saying, this is a really important project, this is a really important film. Keep us posted. But nobody would offer funding. Nobody really jumped in to do it with us, which was really disheartening, I’ll be perfectly honest. You know, just devastating, but also kind of indicative that the topic that we were taking on, the story that we wanted to tell is what’s happening in the margins. It’s not really priority and mainstream, but yet it was a growing problem. It was a growing epidemic, we felt. So we felt it was really important to tell the story.
Donna
Yeah. So, unfortunately, this is a fully independent film, independently funded. We were fortunate. We did interview a lot of physicians and people within Ehlers-Danlos circles who contributed their time, which we’re very grateful for. But, no, this was really kind of our…this was a stealth project and I didn’t even…I didn’t even tell people that I was working on it. I’m the producer and did not share that because, you know, there’s repercussion. Right? What do you mean? You’re gonna show some of these deeper, darker things that are happening. You also have to realise, when we started filming, there was still belief that Ehlers-Danlos was really just kind of being bendy. Right. And the documentary of Lara walking the London Marathon, which is amazing, you know, really inspiring, but also not a possibility for a lot of people that have the comorbid challenges. So I think when we started filming this, there was definitely a different understanding of what Ehlers- Danlos was. And, you know, and I get criticised even now, like, oh, you’re focusing on the complex side. You’re focusing on the complex side. And I said, well, we didn’t intend on that. It was not our intention to show all this complexity within Ehlers Danlos.
Donna
But unfortunately, that’s the reality for so many people. And you can hop on the Ehlers-Danlos website and they have a whole section for obituaries. And something that struck me in a lot of these obituaries that you read, the families are vocally saying, you know, “because my child couldn’t get help, because this person struggled with healthcare”, and they’re actually upset enough to be putting this in obituaries. And I think that in itself shows that there really is a bigger problem with complex care for people with EDS.
Cassandra
Yeah. I think it’s so disappointing that you didn’t get the support that you needed, but I commend you and everybody who worked on it for persevering and getting this done, because I think it’s a really powerful, powerful documentary.
Donna
I have to say, we had some really big stories that we had to leave that we couldn’t cover because of funding. So part of me, I keep teasing Andrew, I’m like, when are we doing the sequel? Let’s go. There’s still more to tell. So, you know, stay tuned. Who knows?
Marcia
Okay. You also have a project. Is it Elevate Rare?
Donna
Yes, thank you for asking.
Marcia
Yeah. Could we talk a little bit more about how that began and what its heart and mission is?
Donna
Sure.
Donna
So, essentially, through this experience over a decade of working with families in the legal system, we’ve learned a lot. We’ve learned a lot. And I talked before about how this, really kind of global network, formed with doctors and physicians and lawyers and families that support people when they have these allegations. But on top of that, there’s a lot of other problems that are kind of sticky, problems that people run into in health care that don’t really have solutions. And there’s a lot of gaps and there’s a lot of unmet needs. So I work with this nonprofit called Pathways to Trust, and we go in and we educate medical students about gaps in care. And I realised that with this film, you know, the film has an impact plan where we’re doing screenings and we’re doing education, but it’s kind of film-related. And we realised that this group of people that have been working on this for so long, wouldn’t it be great to organise and try to bring the education around these stickier topics to clinicians and to patients. So we founded Elevate Rare. And that’s really what our mission is. Our mission is, it’s a vehicle to provide educational programming about the stickier problems in medicine, the unmet needs in medicine that people don’t talk about and, you know, false allegations and kind of how the medical child abuse piece is part of it, but there’s a lot of other problems.
Donna
Like Karen, when she was in hospice, did not meet the hospice requirement because of her rare disease and because she had so many things that were different. She was very allergic to Morphine, she required a Fentanyl pump. She was young, so she could walk around and she wound up getting thrown out of two hospice programmes. That’s an area that we’re going to look at. We’re going to look at palliative care. We’re going to educate palliative care providers, hospice providers, about the unique needs and not just Ehlers-Danlos. So many rare diseases, none of this problem is just EDS alone. So many rare diseases are getting caught in the false allegations net, are having problems accessing palliative care when it’s warranted, having problems accessing hospice care when it’s warranted. So I’m really excited about this.
Donna
We have a survey that we’re going to be putting out to start trying to collect the data that desperately needs to be collected. We are having meetings. We actually…I was just down at Columbia Law School for a roundtable with Child Protection to try to talk about what is some of the reform needed there.
Donna
And we’re really just going to hope to be kind of a mouthpiece and a resource to help guide people to fix this problem, because this is a fixable problem. I am convinced to my core that these problems can be fixed. So I’m hoping to bring together the people to do that through Elevate Rare.
Marcia
That’s great.
Cassandra
I mean, you are doing so much. Are there any particular projects or partnerships that excite you the most?
Donna
Goodness. So I’m very blessed. You know, I joke, I know so many people because I’m just old and I’ve been doing this for so long. (laughing) But there’s so many good organisations out there in the trenches, doing tremendous work on the ground. And that’s part of what I’m trying to just pull together. You know, a lot of these nonprofits work in kind of silos. There’s always territorial fundraising challenges and stuff. But at the end of the day, people go into this because, they want to help people, they want to fix a problem.
Donna
So, yes, I mentioned Pathways to Trust. I love going in and talking to medical students. We bring in a patient, we bring in a physician, we bring in actors and we show people what happens in clinics when medical objectivity goes out the window because of bias or because of racism or because of something that was in the record that’s not true, that the resident took as gospel. So I love doing that kind of work. I love healthcare navigation. I work with the Connective Tissue Coalition, which is doing a lot of exciting research and really trying to help fund researchers.
Donna
I think there’s just so many organisations that I’m looking to pull in to work with healthcare literacy, healthcare navigation, and also working with marginalised patient populations. You know, people who don’t have the money to go to these specialists and afford these doctors. My friends kind of make fun of me sometimes because they’re like, you know, this is a lot. And I said it is a lot. And it’s kind of an area I didn’t intend on going into. But I developed this expertise that nobody wants but we have now, so I feel an obligation to use it for our listeners.
Marcia
For our listeners who might be feeling inspired by your journey, how can they get involved or support your work, especially with the film or Elevate Rare?
Donna
Yeah, that would be great. Well, I can be found a couple places. The Coalition Against Paediatric Pain, which is tcap.org, Open Eye Pictures, with the film Complicated as a producer, and then my own nonprofit, Elevate Rare, which is me, and then the Connective Tissue Coalition. So any of those websites lead to me in one form or another.
Cassandra
The work that you do is so impactful, important and powerful, but I can imagine it must be really heavy emotionally sometimes, and also with your own children and what you need to do there as a parent, what keeps you going? What keeps you motivated? How do you manage and juggle it all?
Donna
That’s a great question. Not well, as you’ve gotten to know me…(laughing). It’s kind of a circus behind the scenes, but, yeah, what keeps me going? I think I shared with the two of you. My family had nine years in the margins of medicine. My children lost their childhood. My husband, unfortunately had a heart attack and we lost him because of the stress and he’s always with me back here (points to picture behind) I think, honestly, like most advocates, it’s probably trauma, it’s probably anger, it’s probably sadness, it’s probably all of those emotions that you go through when something happens to you and then you see that there’s a way that it could be better. And you have a desire to kind of help other people not go through that.
Donna
I was so lucky, so lucky when my kids started getting sick that I met these incredible women who were volunteering their time as advocates, and I learned from them. And, you know, the community is strong. That’s kind of how we survive. Right. We kind of create these pockets of people in our life who understand and who can help us get to the next step. You know, I think that’s kind of what motivates me is just, I meet so many other people in this fight, working so hard that you want to contribute and work with them, and, you know, in this case with the film, just create a tool that they can use.
Donna
This film is a tool for any advocate to take and use to validate their work. I don’t know if I answered your question the right way, and I’m not even sure day to day…
Cassandra
There’s no right way.
Donna
We got put on this road we didn’t ask for, so we just keep going.
Cassandra
Yeah, you’re doing a great job. Absolutely commend you for the work that you do.
Donna
And I’m so excited about your podcast. I’ve known John Ferman for a very long time. EDS Awareness was there when nobody else was, and doing the webinars and the education. So now to have the two of you launching this podcast is just so exciting. And I’m really grateful to be a guest here, but also excited for what you’re going to be putting out into the world.
Cassandra
Thank you. Yeah, we’re excited as well. We’ve been really excited about having you on, especially after watching the documentary, even moreso. I was like, “oh, my gosh, I can’t wait to speak to this woman!”
Donna
Thank you. And so the film itself, you know, we’re in a very exciting time because we qualified for Oscar consideration, which is really exciting. So we’re having Oscar showings, and we’re hoping that that’s going to raise and validate Ehlers-Danlos Syndrome.
Donna
We also recently found out the film will be out in early 2026 on Apple TV as well as on other streaming platforms. And it’s also available for medical education and to be shown at conferences. So, you know, there’s a lot of ways to get the film out and hopefully put together roundtables, discussions, panels, and education. And like I said, we have an impact plan and we’re fundraising for that right now to do more education that’s directly tied to the film.
Marcia
Where exactly can they find that fundraiser for our listeners? Hopefully they might want to support too.
Donna
No, that would be great. It’s Open Eye Pictures. It’s openeyepix (Pix).org they can just look up Open Eye Pictures. Complicated. And we have a whole page. And there’s an impact plan that kind of explains the type of education that we’re putting out there with the film. Yeah. This is not just a movie, it’s a movie with a mission, for sure.
Marcia
Have you seen any small wins, moments of progress or shifts in awareness that give you hope for the future?
Donna
I would say yes. One of the greatest things that’s happening right now is that we’re finally starting here in the US to get Ehlers-Danlos clinics, like true clinics. Not just a physician saying, I know something about it, come to my clinic and then, oh, I don’t know about those comorbid conditions. That’s been really exciting. You know, medical school, South Carolina, that’s in our film. They opened up. University of Virginia has one. That’s what’s needed. Right? We need a one stop shop. And my hope is that if we can build them here in the US, we can start building them in every country in the world. I just had a friend who has Vascular Ehlers-Danlos. Her daughter was expecting a baby. Very stressful. And they went down to UVA and was part of the Vascular Ehlers-Danlos Maternal Foetal Medicine Team and got extraordinary care. We were terrified and it was beautiful. And the baby, baby Sophia has arrived and she is gorgeous and mum is great. And that’s where the hope is, right? That’s where the hope is.
Marcia
That’s amazing. That’s phenomenal. We do hope that can roll out everywhere. UK next.
Donna
Exactly, exactly. You know, there’s a lot of work to be done here and there has to be the willingness to do it. And that’s where I think community, the Ehlers-Danlos community. You know, we’re strong, we have a voice, you know, social media. One of the things that a physician said to me recently, which kind of cracked me up, is he said, “oh, yeah, Ehlers-Danlos, that’s a social media thing. And I thought it’s not only a social media diagnosis, but I’m thrilled that you think that it’s so common out there on Ehlers-Danlos. Like, that’s so much better than what is that? And how do you spell it?
Marcia
Yeah, exactly.
Cassandra
What a thing to say.
Donna
Yeah, it’s a TikTok disease. I’m like, oh, boy. Yeah. But you know what, that’s great. That shows the power of people raising their voices. That shows the power of advocacy. And like there’s so many people that have blogs and podcasts and are writing articles and you know, that’s where the change comes. This whole thing, what I’ve seen in, you know, what is it, the 14 years I’ve been doing this now, is it’s really the patients who have pushed this forward in every aspect. It really has been patient driven. Physicians obviously on board and pushing the medicine part. But a lot of times the physicians who are pioneering it was because they had patients finding them and kind of informing them and driving progress. So keep going everybody. We’re getting there.
Cassandra
Absolutely. It’s been really informative and just great to have you on. And you shared so much. You’ve kind of covered what you’re doing and what you’re looking forward to. But what is next for you either personally, professionally, what’s next on the cards?
Donna
That’s a great question. So like many with Ehlers-Danlos and being a caregiver, my professional life took a little bit of a backseat and I was doing a lot of consulting and now I’m at a stage where I have to kind of figure out, without my husband, the road forward. So, you know, the nonprofit Elevate Rare and the medical education is a big part of it. Working with open eyed pictures and the film is a big part of it. I have another film project that I’m looking at as a possibility and trying to figure out, you know, as the breadwinner in my family, really that’s really what my priority is. So, you know, I’m not really sure we’ll see. I’m gonna continue to kind of walk down this road and see where it leads me. But you know, I hope to do more projects like ‘Complicated’ that can really help advance and move the needle in medicine for people that need to be heard and just give other people a voice.
Cassandra
Do you have a background in film?
Donna
Yes, I do. I was actually. It wasn’t even film. This is actually my first film. It was video production. I was a video producer for, of all things, the airlines. At one point in my early career I would do music shows and video interviews and then I went into the agency side. So I worked for an agency and we did a lot of short films and videos and things. But this is my first real feature documentary film. So it was a real honour to work with Andrew. You know, he’s truly one of the best and to see what he was able to capture under some really difficult filming environments. The process of filming it was very interesting because, you know, me being the advocate and me knowing these families, I think helped with the trust. But at the end of the day, he had to walk in and earn their trust. And, you know, to his credit, he did that. He’s an incredible man. He’s an incredible advocate for these families, and he’s learned more about EhlersDanlos than he ever wanted to. (laughing)
Marcia
For families who are at the beginning of the EDS and rare pain journey, what kind of message would you want to give to them?
Donna
I think the most important thing you can do is listen to your instincts and listen to your body, because you know your body best, you are your expert. I think it’s really important to be aware that genetics does play a role. Even though we don’t fully know the hypermobile causes, the genetic causes, they’re making a lot of progress in that area. I think genetics can play a really important role for people because it can rule out, obviously, some of the more serious forms of Ehlers- Danlos, but it also can give you kind of validation. So when you walk into a clinic, you can say, I have been diagnosed with hypermobile Ehlers-Danlos or hypermobile spectrum or whatever the diagnosis is. So I personally am a big supporter of genetics for confirmation of diagnosis. I think people need to understand that building your medical team is really important. You can’t just go to specialists when everything’s on fire. It’s really important to try to work with your general practitioner on what your symptoms are and try to identify who are the doctors you might need on your team and try to find those specialists and kind of build a team that you’re comfortable with, that you can talk to and that with someone that you think you can depend on.
Donna
Because let’s be honest, finding a physician is, you know, you’re going to kiss a lot of frogs before you find your prince. And, you know, doctors are human, so you really want to find someone that there’s a trust factor there. And that’s really important as well. I will say, in terms of kind of how to navigate this can be really overwhelming. And it’s not uncommon for families to not understand and friends to not understand. So, you know, I really think plug into the community, find support groups in your area, look at the Ehlers-Danlos websites that are out there. There’s so much information out there now that wasn’t there before. Plug into your community because honestly, that’s where you’re going to get your support. And sometimes that’s where you get your best information.
Cassandra
Yeah.
Marcia
Thank you for joining us. Sharing the incredible work you’re doing. You’re giving voices to all of those hidden stories that haven’t been heard. Your documentary re-opened my eyes to the journey that has been EDS.
Cassandra
I think that your courage, compassion and dedication to address this really hard stuff, it shows when we talk to you and through the documentary and the work that you do. And we’re really grateful you shared your time and your story with us. It’s been great having you on.
Donna
Thank you so much for the opportunity to do so. You know, I really am grateful for all the support for the film and just the opportunity to talk about it. So thank you.
Cassandra
Once it’s out publicly, I’m going to be sharing far and wide.
Marcia
Definitely, definitely, for our listeners to stay plugged in for the release dates and to know exactly what platforms, so that we can make sure we do get to share it and so that everyone else can get access to it. But I feel honoured that we have been able to pre-watch it. So thank you for that.
Donna
Yes, absolutely. And we have on Facebook, we’re going to start getting more social media out, but there is ‘Complicated the Movie’ on Facebook, so that’s one way that people can follow. And of course I’m going to keep you updated. What I’m kind of hoping as this film comes out is that maybe people will start sharing more their own stories under the hashtag Complicated the Movie. And let’s just all make this everyone’s project, right? Because unfortunately, these stories aren’t rare.
Cassandra
No, they’re not rare. They talk about them being rare, but they’re really not. But of course, once you send over all of the links, including your social media links, we’ll make sure that we’ve got it all in the show notes up on the website so that people can access it. And I know you’re going to keep us up to date with that.
Donna
Absolutely. Thank you, ladies, this has been great.
Marcia
Thank you.
Cassandra
Thank you so much. It’s been wonderful speaking to you. Thank you for tuning into the EDS Unplugged podcast. Don’t forget to subscribe and share.
Marcia
Until the next time, stay informed, stay inspired and stay plugged in. You have been listening to EDS Unplugged, brought to you by Chronic Pain Partners.
