How to Find Answers About Your Health Condition - Jess Dove London
How to find answers and advocate for yourself in the healthcare system, focusing on the power of persistence, community support, and innovative tools for those living with disabilities.
Jess Dove London - Bio
Jess founded Turnto after she was told countless times that there were “no treatment options” for her two sons with serious chronic medical conditions.
However, after years of research, travel and investigating, Jess found a handful of treatments that helped her family tremendously.
Most of these treatments were hidden in medical literature, some even low-cost and easy to apply.
She knew many families, just like hers, were going through the same experience, unaware of the life-changing opportunities available to them.
So she set on building Turnto, bringing together the latest technology, consumers and experts to solve this problem with the aim of bringing thousands to their next medical breakthrough quicker.
Summary
Imagine travelling halfway across the globe to learn about a treatment that would benefit your child. Endless research, countless unanswered questions, and the frustration of feeling like you're the only one fighting for solutions. How do you keep going when the healthcare system falls short?
In this episode, Jess Dove London, founder of Turnto.ai, shares her journey in seeking effective treatments for her child with cerebral palsy. Jess discusses the challenges of navigating the healthcare system, the importance of accessing reliable health information, and how her app helps individuals find daily health breakthroughs.
She emphasizes the need for community support, vulnerability, and curiosity in advocating for oneself, and explores how AI tools can assist in uncovering answers to health-related questions.
For her son’s condition, cerebral palsy, Turnto.ai has already discovered more treatments than anywhere else, including a handful that have truly changed his life. The platform is now expanding its reach to include conditions like Long COVID, ME/CFS, Parkinson’s and more.
As we end every episode, we talk about how we can end the stigma surrounding invisible conditions through belief, empathy, and curiosity.
Takeaways:
Health Information Access: Comprehensive health information is crucial for individuals with disabilities to make informed decisions about treatments.
Community Support: Sharing knowledge within a community is vital for navigating the healthcare system and fostering advocacy.
Turn2 App's Role: The Turn2 app offers daily health breakthroughs, using technology to empower those with invisible conditions.
Vulnerability in Advocacy: Vulnerability and curiosity are essential in advocating for oneself in the healthcare system.
AI in Healthcare: AI tools provide valuable insights, simplifying healthcare navigation for individuals with disabilities.
Ending Stigma: Ending stigma around invisible conditions requires belief, empathy, and strong community support.
Cerebral Palsy - Defined:
Cerebral Palsy (CP) is a group of neurological disorders that affect movement, muscle tone, and coordination. It is caused by damage to the developing brain, often before or during birth, and can result in a range of physical disabilities. The severity of CP can vary widely, with some individuals experiencing mild challenges while others may have more significant impairments that affect their ability to walk, speak, or perform everyday tasks. CP is a lifelong condition, but therapies, treatments, and assistive technologies can help manage symptoms and improve quality of life.
Types of Cerebral Palsy:
Spastic Cerebral Palsy: The most common type, affecting about 70-80% of people with CP. It is characterized by stiff muscles and exaggerated reflexes, leading to difficulties in movement.
Dyskinetic Cerebral Palsy: This type includes athetoid, choreoathetoid, and dystonic CP. It is characterized by involuntary movements, which can be slow and writhing or rapid and jerky. Muscle tone may fluctuate between being too tight or too loose.
Ataxic Cerebral Palsy: The least common form, affecting balance and coordination. People with ataxic CP may have a wide-based gait and struggle with precise movements, like writing or buttoning a shirt.
Mixed Cerebral Palsy: Some individuals have symptoms that do not fit neatly into one category, and they may be diagnosed with mixed CP. The most common combination is spastic-dyskinetic CP.
Example Accommodations for CP:
Work Accommodations:
Ergonomic Workstation: Adjustable desks, chairs, and keyboards to accommodate physical needs and ensure comfort.
Flexible Scheduling: Allowing for adjusted work hours or break times to accommodate fatigue or medical appointments.
Assistive Technology: Speech-to-text software, screen readers, or specialized communication devices to assist with tasks that involve typing, reading, or communication.
Accessible Work Environment: Ensuring that the workplace is wheelchair accessible, including ramps, wide doorways, and accessible restrooms.
Job Restructuring: Modifying job duties to remove non-essential tasks that may be difficult due to physical limitations.
Remote Work Options: Offering the ability to work from home, reducing the physical demands of commuting.
School Accommodations:
Individualized Education Plan (IEP): A customized educational plan that outlines specific learning goals and accommodations tailored to the student's needs.
Physical Accessibility: Ensuring classrooms, restrooms, and school facilities are wheelchair accessible.
Extra Time for Assignments and Tests: Providing additional time to complete assignments, exams, and other school-related tasks.
Assistive Devices and Technology: Providing tools such as communication devices, computer software, or adaptive writing tools to support learning.
Classroom Aide or Assistant: Assigning a personal aide to help with mobility, note-taking, or other classroom activities.
Modified Physical Education: Adapting physical education activities to accommodate the student's abilities and ensure participation in a safe and inclusive manner.
Preferential Seating: Placing the student in a location that best suits their needs, such as near the front of the classroom for better visibility and access.
Resources:
Global Cerebral Palsy Resources:
Cerebral Palsy Alliance: Based in Australia, the Cerebral Palsy Alliance is a global leader in research, therapy, and support services for individuals with CP. They provide extensive resources, including information on treatments, assistive technology, and advocacy efforts. Their website also hosts the Cerebral Palsy Research Foundation, which funds groundbreaking research worldwide.
Website: Cerebral Palsy Alliance
United Cerebral Palsy (UCP): A U.S.-based organization that supports people with CP and other disabilities. UCP provides a wide range of services, including advocacy, education, and direct support services. They also have an international reach, working to improve the quality of life for people with disabilities around the world.
Website: United Cerebral Palsy (UCP)
Cerebral Palsy Communities:
Turnto.ai: Turn2 is a health technology platform designed to provide individuals with CP and other conditions access to the latest health breakthroughs, treatments, and supportive communities. It offers a space for users to connect, share experiences, and access information tailored to their specific needs.
Website: Turnto.ai
Cerebral Palsy Support Network (CPSN): An online community where individuals with CP, their families, and caregivers can connect, share experiences, and access resources. The CPSN offers a platform for discussion, support groups, and access to expert advice on living with CP.
Website: Cerebral Palsy Support Network
MyChild at CerebralPalsy.org: This is a dedicated community and resource center for individuals affected by CP. It provides a forum for discussion, information sharing, and support for people with CP, their families, and caregivers. The site also offers a comprehensive library of articles and tools to help manage life with CP.
Website: MyChild at CerebralPalsy.org
Chapters:
00:00:00 Empowering Voices in Healthcare Advocacy
00:04:06 Unlocking Healthcare Options for Cerebral Palsy
00:10:12 Navigating Healthcare Advocacy and Innovation
00:19:47 Building a Health Community of Support
Transcript
Jess Dove London
00:00
With the world leader who was doing a massive talk on all the treatments that exist for cerebral palsy and she was just going from one thing to another and there was one treatment I remember particularly she was really excited about and at the time I was reading five to 10 papers a week. I'd started studying neuroscience Like I was doing everything I could possibly do, like I knew, and I had never heard of what she was talking about and, um, it was actually. It's a free treatment, like it's actually one of my literal motivations for starting turn two. Because it's a free treatment. That is one of the most exciting things happening in cerebral palsy and no one knows about it and like it.
00:39
You know how many years will it take, um, for people to hear about something they can be doing right now? Because it's like a training method and it's just this amazing way to unlock modal learning. Yes, I did raise my hand in the conference and I did say to her, like you know, I shouldn't have to fly. This should be on my phone, like all the things she's sharing about nobody knows about, and it's just like, it's just not right and it's like people will miss all this opportunity of things they can be doing.
Tim Reitsma
01:10
So imagine with me for a moment that you have to travel halfway across the globe just to learn about a treatment that would benefit your child. And get this. It's buried in a research paper and you would probably never know about this treatment for many, many years. Endless research, countless unanswered questions and the frustration of feeling like you're the only one fighting for a solution. How do you keep going when the healthcare system is falling short? Hey, tim here, and thanks for tuning in to another episode of the Invisible Condition Podcast, where we talk about advocacy and unusually normal things the conditions, diseases and illnesses we live with. You know we will end the stigma of invisible disabilities by empowering voices, and today's voice is brought to us by Jess Dove, london.
01:59
Jess is the founder of this really amazing health tech company called Turnto.ai, a company with a powerful and straightforward mission to speed up breakthroughs for every single person, building the home for all voices and insights for every health condition. Jess's journey began when her family was told there was really no more treatment options to help her son, who is living with a rare type of cerebral palsy. Determined to find answers, just traveled across the globe, attended conferences, read dozens and dozens and dozens of research papers to seek out the answers, the information that could improve her son's life and for her son's condition, CP Turnto has already discovered more treatments than anywhere else, including a handful that have truly changed his life. This platform is now expanding its reach into including conditions like long COVID, me, cfs, parkinson's and more. Now, in this episode, jess shares her experiences and the importance of community and support, the power of curiosity and advocacy in managing invisible disabilities. She talks about how vulnerability is a strength and how technology is changing the way we approach healthcare.
03:17
Have a listen. Well, jess, I am excited to get into it into this conversation today and, for those who are listening or maybe watching, Turnto.ai is on my website. They are a proud supporter of Invisible Condition, and so I'm just excited to have Jess, the founder of this amazing health technology startup, here on the show, who's just going to talk to us about just the foundation of her journey. Who's just going to talk to us about, you know, just the foundation of her journey a mom raising children with disabilities and the problem she's solving, and just the goal is. You know, listeners you're going to, I know you're going to be not just inspired, but left with some actionable takeaways from this.
Jess Dove London
04:03
So, jess, thanks for joining today, really nice to be here.
Tim Reitsma
04:06
Tim, you know, when we first connected like I do with all my s, we have a pre-call you said something that really stood out to me, and it was I shouldn't have to fly across the world to learn about treatments for my son.
Jess Dove London
04:21
Talk to us about that we're going to jump right into this.
Tim Reitsma
04:25
Right in Tim, Talk to us about that. We're going to jump right into this, Right into it. I think it's a great place to start, because when you said that in our pre-call, I was thinking you're absolutely right, but there's treatments for a lot of conditions that we just don't even know about. So talk to us a little bit about that. What was going on?
Jess Dove London
04:42
So my son had been diagnosed with a rare type of cerebral palsy and I'd gone on this quest for many years to just find different options and treatments that would help him. He is a super amazing kid, like as he is. You know, I always feel like I want to say that because I think sometimes these health labels can dehumanize people. He's just spunky, full of life. He's actually a real daredevil, but like he wants to do lots of things. So we're like how can we help unlock his body with him? And I'd ended up at this conference. It was a leading conference for cerebral palsy. It was the first time they'd ever let anyone with lived experience attend. There were like like thousands of scientists.
05:27
I felt really like an imposter, like I truly did, and I'm a pretty confident person. I think I did lose a lot of my confidence maybe in my earlier years, but I did feel this like I was sitting in sessions and I remember even they were talking about parents and I was sitting there just like going. You like I'm here, I'm in the room, like um, but you know, I at the time like I read a lot of papers. I was like pretty well informed and um, yeah, in a bit in a session with the world leader who was doing a massive talk on all the treatments that exist for cerebral palsy and she was just going from one thing to another and there was one treatment I remember particularly she was really excited about and at the time I was reading five to 10 papers a week.
06:16
I'd started studying neuroscience, I was doing everything I could possibly do and I had never heard of what she was talking about and it was actually. It's a free treatment, like it's actually one of my literal motivations for starting Turn 2, because it's a free treatment. That is one of the most exciting things happening in cerebral palsy and no one knows about it and, like you know, how many years will it take for people to hear about something they can be doing right now? Because it's like a training method and it's just this amazing way to unlock modal learning. Yes, I did raise my hand in the conference and I did say to her, like you know, I shouldn't have to fly around. This should be on my phone, like all the things she's sharing about nobody knows about, and it's just like it's just not right and it's like people will miss all this opportunity of things they can be doing, unless they want to fly around the world too. So you got a good flight.
Tim Reitsma
07:11
But that wasn't your intention. Just to say we're just going to hop on a flight and learn all this great information and fly back home to then be able to maybe bring up with your doctor or talk with your care team or implement with your son.
Jess Dove London
07:26
And that story is really interesting because that particular treatment she mentioned. I then had to go on a hunt so, like all the world leaders are sitting around talking about this thing and I couldn't find anyone to do it, I ended up like finding a therapist who knew an academic therapist in another city. I like somehow got on his wait list. I got him. I got him to train somebody else and it's literally one of the most effective things we've ever done and you could learn it in 20 minutes. Like you could learn it, anyone could learn it. So it was just like ridiculous. So I.
Tim Reitsma
08:01
I can imagine there's people listening to this just being frustrated on your behalf, and there there's also, but there's yourself, who was, I can imagine, just going, okay, what do I do now? And so why did you choose to say, okay, I'm going to figure this out, I'm going to advocate for my son, I'm going to, you know, then turn it into a business. But you know, there's a moment of that self-advocacy or care as a caregiver where you have to say, you know, okay, this is what it is, or we're going to continue to to fight on.
Jess Dove London
08:35
Yeah, um, I think you know there's often like different moments in our life that we um become advocates like I don't think. I think you know being an advocate, you know, for some people it comes more naturally than others and even to those like, probably for me, the beginning, with my kids, it wasn't as natural because we had a lot of medical trauma and I just was pretty beaten by that. But then I learned the hard way to like doesn doesn't matter, you just speak up and you just make mistakes, like, but you just, you know, and there was some pretty, I had some very significant experiences of medical gaslighting um, where I just learned I'll never do that again, I'll never not speak up, um, but I do think it's an invitation, um, and I think it's possibly when it is your child like, it is a, like an easier invitation sometimes than yourself. Um, I did have MSCFS in uh 2000 I always forget 13 years ago.
09:36
It's all a blur. I'm telling my kids um, so it was much harder to advocate for myself, um, actually, I think, because I had a lot more doubt. I just, um, you know, and at the time you know there was, and there still is, so little understanding or support. You know it's very haphazard where you're going to get support. So, yeah, I don't think I think it is a different. I don't feel like I have anything profound, other than I think it's an invitation and it's easier. It was easier for me to do for my kids and for myself someone who is part of your team or is support.
Tim Reitsma
10:12
One of the conditions part of the app, julie, was she wrote an interview, written interview, and I'm going to mess up her quote so I'll have to put a link in the show notes. But she said something in there about why would I not accept the quality of care that I would advocate for my child? And so I think, as a caregiver, as a parent, and wanting the best for that person or that I'm caring for or that I'm caring for, and you know, she kind of worked it into herself of no, I need to fight for this, I need to ask questions. But you said something there that caught my attention, which was you made a lot of mistakes and I feel like when I'm advocating for myself, I'm afraid to make a mistake or ask the wrong thing in front of my doctor. How did you overcome that? Because I'm sure it's not just me that is feeling like oh no, I need to know all the answers.
Jess Dove London
11:13
I think it's like one of my biggest passions and I even like again have to remind myself of that when I'm like coming into an intimidating appointment or have an awkward moment with a medical professional or a frustrating moment. I did like have, yeah, a pretty significant experience once with my son when he was sent home after a surgery and he just wasn't right and like I knew he wasn't right and my husband went into ED and they didn't admit him. They sent him home, like we're just anxious parents and he'd been a medical kid. So like you generally shouldn't send away parents who, kids, have been in ICU for a long time. You know they're not going to come in easily. But then the next day, you know, I was like still anxious, I'm like he doesn't look right. So we went to a local doctor and the doctor said, he's fine, you're just being anxious. And I'm um, like, so then I'm not making this up. The next day I went to another doctor, um, in another place. Like I drove somewhere else. I'm like, okay, we'll go to this other place, like 40 minutes away. Same thing.
12:17
The doctor sent me away and anyway, that night I didn't sleep. The entire night I was watching him and I just was like, what is it me, am I wrong? Um, he didn't look right. I just knew something was wrong. And I just was like, is it me, Am I wrong? He didn't look right. I just knew something was wrong.
12:31
And I found out there was a medical clinic that staffed senior doctors and I walked in and within 15 minutes they called an ambulance and he actually went into shock. An hour later he would have passed away if he'd been at home and like that moment was just this, like shock, like smack in the face, like who cares if I was wrong? Like who cares if I'd gone to that fourth doctor and he was fine, like what does it matter? I'm a bit embarrassed, I've wasted some time. And obviously that's like a very dramatic story and it's a real story and it's crazy because I had to go through four doctors to like be listened to, like we couldn't even being listened to an ED, but this was a senior doctor. He could see the signs that something that his adrenal gland wasn't working, so like yeah, I guess that experience was just like really liberating and like who cares if I'm wrong? Who cares if I waste time? But obviously, yeah, it is quite an extreme experience.
13:27
But you know you read these stories all the time when people aren't listened to and these I mean it's really hard as well. Cause I don't want to feed fear that people have, like cause you can have this fear, um. But again, at the same time, I kind of think if you've had a few things really go wrong, maybe it's not fear. You're just like using data points. Like you know, I think we're made to feel sometimes by health professionals that were overly anxious. But if you've been unwell and you have significant pain, like you've got a really serious health problem, you know it's a real thing you're facing, even if they can't explain it yeah, I've, I resonate with your story.
Tim Reitsma
14:06
Someone recently I can't I won't go to the details, but had a very similar story as a parent with their child and the parent said, well, what tests can we run to just rule everything, anything out? And the doctor threw out a test and he said, okay, let's do that one. And the doctor was a little shocked. To sum up the story real quick from going to the hospital being told it was nothing to four days later having massive, life altering surgery for a child. You know, I feel like we are our best advocates. We know what's going on in our bodies, we know when we're feeling off. And I love what you said it's a data point, it is. It's a data point. It's going.
14:52
You know, I said to my wife a few weeks ago like something just doesn't feel quite right. I'm just going to wait it out, see what it feels. And it went away. It might've just been a little virus or cold or something, but it's like, okay, something is not quote, unquote my normal and being able to ask your doctor, being able to seek that fourth opinion yeah, just don't stop advocating for yourself. And this all then turned into a health startup. Talk to us about the company you're building. I'm fascinated by it. I don't have cp and I know multiple multiple sclerosis is on there and long covet, but I'm just fascinated with the app and what you're building and how it's helping people. So talk to us about it yeah.
Jess Dove London
15:38
So the app kind of really came about more, um, from the experience of just trying to find more treatment and health breakthrough information. So from that journey with my son, I think it's this also knowing that when you have a complex health condition, there are just so many places that you can find a puzzle piece. So really, when I was sitting in that conference and they're sharing all of these things and I'm having to fly around the world to learn about it, that is a problem. Like that's just a problem that needs to be solved. And particularly they were talking all about this early intervention work that existed when my son was that age, that I didn't know about. Like that is just gut-wrenching. You're like I was asking everybody and nobody was giving me that knowledge.
16:26
So really the problem we want to solve after leaving that conference that I went away with was that health breakthrough information lives everywhere. So it lives in papers, it lives in these conferences and it lives with the community. Like the community are sometimes ahead. You know, depending what it is leading clinicians are sometimes ahead as well. So you know for an every like what does that mean in my life? It's like I can't even know what's all that's out there. I can't stay on top of what's coming out, and so then I'm missing out on things that maybe improve my quality of life today. So that's the problem. Like often in a startup, you have a problem. Ours is just a small problem, tim.
17:07
Just tiny, just small just small, every uh, and you know it relates to every health condition. So after that time I went away. I have built things before in the not-for-profit space and I I think it's a real privilege to be able to like reimagine the world and get people together and try build, build a different story. So, um, yeah, started a startup. We built an early product where we kind of found every treatment that exists for cerebral palsy, just to test the idea. And we found hundreds of treatments and the reason that's so interesting and it relates to every condition is probably 99% of them had research behind them. So they're separate teams of people working on all these different treatments and consumers and patients know of about five to 10. So, like it's just wild that there's all these amazing people working all these things but you just you don't know if you're not lucky enough to live near that or have that doctor, or maybe there's not enough evidence, but it's still interesting. Um, yeah, so built this, built this sort of early idea, and then early last year we brought a team together um to really solve this, um, using it in the sort of they are using, building a tech product. So, um, you know, put it, putting a mobile app together and launching cerebral palsy initially with you know how do we stay on top, so our product is like a daily product, but you can use it weekly.
18:28
Putting a mobile app together and launching Cerebral Palsy initially with you know how do we stay on top. So our product is like a daily product, but you can use it weekly and it provides all the perspectives on all different treatments and medical health breakthroughs and any sort of health breakthrough information. Yeah, so that's sort of what led us to it. And it's pretty early days. Like we just launched Long COVID at MECFS. We're launching Parkinson's in a few weeks, then we're launching MS, then we're launching spinal cord injury, um, and, and it's all just the beginning, like for us it's, you know, giving people that information. But really it's also next step of like, um, yeah, how do you go deep as well on what's relevant for you?
Tim Reitsma
19:05
I was interviewing somebody recently about just all the information that they're finding for their condition and trying to figure out, like what to even bring to their doctor as a potential treatment and potential diagnosis and all this stuff. And so if someone goes to your app and whether they have one of the listed conditions or not, I'm curious what will they find and how do you put it all together, to all that information together, because I can imagine it's a lot.
Jess Dove London
19:36
It's a lot, I think depending where you are on the journey as well really matters. If you're earlier on, if you don't have a diagnosis, that's like a really challenging time as well. It's like trying to get those puzzle pieces. At the moment we are launching into people with more sort of even if you're not diagnosed, you do know you've got a particular condition. In our current sort of format, the way we put it together is just giving people like a snapshot every day, so it's almost like a TikTok experience, where you get five to ten posts that are for you every single day, because it is really hard to stay on top and I think you know, rather than doing hours and hours of research, it's a way to just get information every day, because there's new things published every single day for health conditions and it's like giving you a snapshot and then in the app, the ability to go deeper through search and community, and that's just right.
20:31
Now we are launching a few more sort of more aggregate experiences so you can sort of get more of a bird's eye view of like what are the 10 most exciting things coming around the corner or what is relevant for me personally? But being overwhelmed is a real challenge. I think it is something we hope to support as well. But at the moment, what people get most is they're just learning new things. So you know, a little bit like me going to that conference sharing those sort of things, sharing what exists, even just in the ecosystem, particularly when there's not a clear silver, you know, a magic pill that makes you better. Like you know, we all want that, of course. Like that is the hope that there is a really easy treatment solution that works for all. But often, when you're living in the sort of the mess of it, you're just looking for your next piece and seeing if it relates to you and can you access it and you know, is this your biggest pain point.
Tim Reitsma
21:31
I love that. I'm excited to see it being built out for more conditions. You know, if there's a place to vote on which condition is next, and you know, but I think you know, you highlighted a couple of things that really stood out to me. One is community. I think you highlighted a couple of things that really stood out to me. One is community, and in your personal journey, how has community played a role?
Jess Dove London
21:53
It's interesting, I think, when I was unwell 13 years ago myself, we didn't have the active Facebook groups or anything like that back then, so I had no online community. I only had the few people I met you know, and you'd meet them and you'd like grab hold of them and be like tell me everything, like what's been your story. I mean it could be. Like you know, to this day, my bit, our family, like my partner and his best friend, is someone who was unwell when we were unwell.
22:24
I was un unwell, so but in my son's journey, like the online community has been pretty incredible. I think people are sharing whatever they're learning, they're incredibly supportive, like I think patients just give and give and give. And because you have to fight for some of these insights with blood, sweat and tears, you don't want, you just intrinsically want to help someone else on that journey. Like it is an incredible experience, if you see.
22:51
You know, I remember putting a post up on a specific question for my son once and I was just so lost and that's like this one person in the UK just went and took photos of everything they tried for this one particular thing and we just went and did it the next day and I thought, wow, wow, like you know how incredible was that mum, that she went to all that effort, and that's kind of what turned to one of the things we do in the app. We actually do capture some of these lessons you've learnt because we want others to easily be able to find that so it doesn't have to be like the same people answering the same questions over and over again. But yeah, I think you know, obviously, like I really believe in patience and the community, you know, and I think it's a very powerful, powerful place, like when you can come together with other people who understand, obviously, like it's. I'm so grateful that it exists today, when it wasn't as strong years before. I'm so grateful that it exists today, when it wasn't as strong years before.
Tim Reitsma
23:47
The power of community and even if it's, like you said, just throwing out one question out there on Facebook or any social platform and just seeing the responses that you get back, whether it's or you post it on Reddit, wherever it is getting that sense of community and it takes vulnerability. It takes vulnerability to share, whether you're a caregiver or someone with lived experience or someone who's living with something. There's that sense of vulnerability, of okay, I need to ask because I don't know the answers. And so if someone is struggling with that, do you have some insights to share or maybe some advice to share? If they're struggling with that, do you have some insights to share? Or you know, maybe some advice to share if?
Jess Dove London
24:31
they're struggling with, um, with that vulnerability it's. It's so interesting you mention that because I've reflected a few times on other friends that I've known who have serious conditions and some of them don't ask questions in community, in like these groups and um, you know, I think we all just do have different personalities, right. For some people, just following along in the conversation is really valuable. Being able to search the conversation, I think, like in vulnerability more generally, like I guess having kids with disabilities it's like I think it's an invitation to be vulnerable, you know, to share in their vulnerability, like that's how I look at it, like they don't have a choice to be in a wheelchair, but like I have a choice to be vulnerable with them in that experience together, if that makes sense. So, yeah, I think the whole experience of having a disability or a health issue is that invitation, and it's not no one.
25:28
I think we can talk about these concepts so ideally, but nobody wants these things, but when you lean into them it can be sometimes incredibly life, rich, life giving. Like I think it's the upside down nature of life, you know, like you have less choice maybe, and suddenly your life is better, which doesn't make sense. Or you need people and maybe some people let you down, because that's often what happens when you actually need people Yet other people come up from out of nowhere and you just have this gratefulness that you couldn't know existed because you've never needed people before. Yeah, so Don't know how it relates to online community.
Tim Reitsma
26:13
I love that, though it's like that invitation to be vulnerable. I like what you said is, you know, for your son, he didn't choose to be born and live with cerebral palsy. And so it's that invitation to say, hey, as a caregiver, I don't know the answers, I don't know half a fraction of the answers, so I need help. Or, hey, I'm here to help because I have this lived experience and we have a friend, my wife and I have a friend, and she lives with she was on the podcast Her name's Jodi. She lives with colitis, and whenever she sends a text and say, hey, something's going on and I just need your opinion on this, and you know, I have Crohn's, not colitis, but it's very similar, it's GI related and so we can talk about things, or we can, you know, give each other advice on things, or say like no, I think you should stop messaging me and go to the hospital, like I think that's where you're at right now.
27:13
But you know, cause I think we get in our own heads of like well, is it that bad, is it? You know, am I making this up because maybe a friend told me or a doctor told me that it's not that bad, and so we kind of just maybe kind of, you know, sink down and go well, maybe I can get through this. And so that's the power of community, whether it's app based, through phone, through whatever, there's so much power in it and I think it just the reality is it's so uh rare to probably get that from your medical professional.
Jess Dove London
27:43
And I just love, I love doctors and specialists like I just have so much respect for so many people. But I think the way the system is you just can't always get that access, access to go with those sort of vulnerable questions and they're just under their own time pressures, you know, and all their workload and all the things they have to manage. You know, if you can find a professional you can go to with those vulnerable questions, it's like hitting the jackpot. You're like what you care about these questions that seem so insignificant. I've had one doctor like that and every time I tell him he's like no, no, this is not okay. And I'm like what? Oh, we just, you know, no one has the answer, so no one's interested. But he's like no, no, that doesn't matter, it's impacting quality of life. Yeah.
Tim Reitsma
28:34
Well, I had a doctor on recently and she gave such great advice. She said whenever a patient, whenever you're going to go see your doctor, you might be having a good day that day. So if your doctor asks you how it's going, tell them what's been happening. Don't just say, oh, today's a good day, because they don't want to hear that. They want to hear what's been going on and so I just love that. Don't sugarcoat it. Don't put roses and daisies all over something if it shouldn't. If something's going on. It comes down to that how to advocate for yourself just how to communicate that out, and so you know you're again.
29:13
When we were in our pre-call, you said that hey, you've got endless stories of how the, the turn to app has helped people. Do you have a story that comes to mind or something that you'd be able to share with us?
Jess Dove London
29:25
yeah, I mean we, we are super grateful because, um, we get lots of messages and you know, I think just to like preface it we're an early stage tech product, in that we're like always we're changing, we're updating it, um, which is really amazing as well, because our team, uh, um, some of our team, have built and been part of amazing apps that people use every day, and so, you know, the key is to listen to people, and so, um, yeah, we feel like we are, we're super early, we're changing, and some of it's, you know people are, is to listen to people, and so, um, yeah, we feel like we are, we're super early, we're changing and some of it's, you know, people are coming back and there's a group of people that really love what we're building. Um, some, some, I remember there's, I mean, many different stories that we hear. Um, I remember, really early on, someone messaging us. Um, we shared some research and some other information about a particular treatment called treadmill training. I mean, it is what it says. It's not like that profound, but in cerebral palsy, it's actually a really interesting treatment and you know, you do it a particular way, and she was mentioning that her hospital team weren't approving this particular treatment.
30:30
They said that there's no evidence and so, because of the app, she actually found evidence and she shared it with her team and the actual hospital team have gone on to start doing this treatment for kids in her local area. So she just needed a little bit of evidence to like push something she was trying to do, and we gave her that evidence. I mean, we didn't, you know, it came up. The evidence exists, but she didn't have access to it. So that was a really interesting early experience for us, like, oh okay, there's something that helped someone advocate at a time.
31:02
We've also had lots of stories around people just making different decisions. So 66% of people who use the app have actually started a new treatment or changed a treatment that they're doing and that, yeah, huge number and it's just because they're getting access to all the ideas and they're able to make different decisions, like, whether that's lifestyle things, whether that's, you know, equipment can be really impactful when you have a disability. In the long COVID space and the ME-CFS community, which we've just launched, there are very few treatments that are. You know, it's very early days. I mean it shouldn't be. Me-cfs has been around for so long, but there just isn't a lot of options. So, yeah, we've gotten lots of stories from people of like finding new things, new information about things to talk to their doctors about, whether that and a whole bunch of lifestyle things people have started trying because they're seeing what other people are doing and not just other people like it's one of the things that I value and I think patients value in the app.
32:09
We call it context and perspective. So, you know, I think I get really frustrated by like vanilla health information. Like you know it's this is one answer. It doesn't really satisfy you and I think patients want the nuance. You want to know. Hey, there's pros and cons, there's research for and against. Like you want to actually like we can handle that. Like okay, there's not a clear answer, but maybe I'm in the one camp that it works, or I'm in the camp it doesn't work, or I'm in the camp in the middle. Yeah, so that's something that we don't just share.
32:42
Crowd information it's crowd with research, with expert.
32:46
It's like a mixture of perspectives on like you know, because how do you know if something is like you know the next snake oil or the next best cutting edge thing? Like it's a really tricky question and sometimes like leaders in the field, have got really interesting stories. We had like some really interesting stories like a while back when we were doing a lot of treatment reviews early on in the app and we were the second most popular treatment people were writing about is a treatment that's had no research done on it. It's very early, it's very safe, it's an intensive kind of physical therapy experience and I met the world leader in that space. She's the world leader in early intervention and she said I'm going to now study this treatment because everyone is writing all these things about it. So that was really really exciting to be like wow. Like you know, let's not wait five years for you to take notice of something that the crowd is. You know, if hundreds of people are saying something, we should be curious right about what's happening here.
Tim Reitsma
33:49
Yeah, that's amazing. You know, I just again I'm like okay, so when is Crohn's going to be on the app?
Jess Dove London
33:53
Or when is arthritis? Let's put it in. We'll put it in.
Tim Reitsma
33:56
Let's put it in Just for me, you know yeah yeah, I love it. No, but yeah, I can imagine a small team, but I can imagine people listening to this are going okay, know if your condition isn't in the app and you know somebody is struggling to put all that information together. Where does somebody go, start Aside from just going to Reddit and Google like, is that where you go?
Jess Dove London
34:26
That's where you go, tim. I mean, you know, you've done it yourself, you know it's about like, like, where is your community hanging out? Like I think, if you're really early on in the diagnosis, you don't always know, and there's probably a few places you know. Maybe it's Facebook groups, maybe I mean Long COVID is really and ME-CFS is really on Twitter X, like it's. Where is your community sitting? You know? I think that's the first question, and then it's obviously it is like, maybe you want to sign up for some Google Scholar alerts. I would probably recommend, you know, signing up to a ChatGBT account. You know, getting access to the latest AI, if you can. You can actually access it for free, but I just think it's the greatest hope we have for, like, I don't know.
35:14
There's a story I mean, it's an analogy I'm sure you've heard it about four blindfolded people touching an elephant, all in different spots. So someone's holding the trunk and they're describing what they're seeing and someone's, you know, feeling the fluffy tail. I mean, is it fluffy at the end of a tail? I don't know. You know, but nobody knows that it's an elephant, and I think when you have a complex health condition, you don't know it's an elephant, particularly at the beginning, and actually I think for me I was reflecting on my story, my feeling with my son. I think it took me years to understand the elephant, to even know like the dimensions of what it was we're facing, what exists, where, like, the cutting edge treatment's going to come from, um, what's quality of life now? So I think ai tools I would, I personally think they give us a hope to find the shape of the elephant much quicker because it can connect data points and so it's.
36:11
You're feeling these different things, you're experiencing this. It's like you may not get a perfect answer, but I think you'll get like a 70, 80% picture that before you had to go to 10 different professionals. Or, if you're lucky to find that, if you can find a world leader in like I have before and I've like cornered them in a foyer in like a conference, and you ask them like off the bat, like hey, what are you most excited about? And you just want to get a little like recording device because it won't be anything you've read. It'll be like, oh, we're thinking about these things. These are like and it's so interesting, um, and it's just that information is so hard to get to and gate kept and all these things because they can't even talk about it, because they don't have the evidence always. But if you're living with a condition, if you're living with a life limiting illness like you need to know what that is right.
Tim Reitsma
37:04
I love it. You know I've got to Google and you know you Google some symptoms and it's like, okay, you've got you know nothing to you're going to have a serious problem in like three hours. So you still have to weigh all those inputs and how they relate to you. And on this show I've said I say we're not doctors here, we're advocates. We've got lived experience. We're sharing what may have worked for us and it might not work for you, but I think it's important just to even have some understanding of what's going on with your condition, just to even bring that to your doctor. And as you said almost half an hour ago, is it's okay to make mistakes and I think that's that validation just in this episode is it's okay? It's okay to not know everything and to make a mistake?
Jess Dove London
37:58
That's right, that's right. I mean, what is it? And that's it, I guess it's. You can call curiosity, like that's all you want from a medical provider. In those moments if you're feeling, you know, if you've got something, you're struggling with a major symptom, a new diagnosis, an old diagnosis, like it's curiosity. You're like can what, can you do? What's going on?
38:19
like we just want that from other people um and I think it's that if there's no answers, then it can be an end of that curiosity, which can be really difficult. Um, but, like, I guess, guess I just always. I have this one specialist I work with and he's like a neurologist and a geneticist and he is the most curious doctor I've ever worked with and he's the most knowledgeable. And it's like we get on a call and at the end of every call we end with like okay, what else is happening? And we just have a chat like what else? What else? What are you thinking? And it's like it's incredible, it's an incredible privilege that we get to talk to him, but most of the time, like you can't do that. You just ask questions and you can feel really stupid. And I can say to him hey, I've got this stupid question. Like you know, should I be worried about this? And it's like, and sometimes he says, like he often says actually, yeah, that's quality of life, let's stop here and think what we can do.
Tim Reitsma
39:17
So yeah, that's brilliant.
39:19
Yeah, it is. It's keep going and it's a good reminder, even at the beginning, where you said, hey, you had to find multiple different doctors and go to multiple different doctors to get that treatment that's so desperately needed. As we look to wrap up, I like to ask everyone this question Invisible conditions exist with a purpose to end the stigma. And there's so much stigma, there's so much fear, there's so much shame wrapped around invisible conditions or invisible disabilities, or all disabilities. How are we going to end this stigma? What is one thing we can do to end this stigma?
Jess Dove London
39:57
Small question Tim.
Tim Reitsma
39:59
It's a small question to end an episode with, or we could go on for another 20 minutes just answering this it's big, but I know everyone has a unique perspective. I'd love to get yours.
Jess Dove London
40:13
It's really interesting, like I was reflecting recently with our app we've gone into long COVID and ME-CFS and I had that condition, like many years ago, and I said to a friend one night, like recently. I said I'm just remembering this time I had, and it feels like I was an alien, like I was living in this world, but I was an alien. Like I was living in this world, but I was like an alien because I was having this experience in my body where, like I talked to somebody, I'd look normal, I'd sound normal and then I'd go lie in the dark for 10 hours. Um, you know, I was a high functioning person who had a lot of purpose, cause, you know, some people have this opinion which I think is pretty rubbish that oh, you mustn't have had purpose in your life. It's like, no, no, I had a great. I was working for the Red Cross, I was traveling the world, I had this great job and I loved it and I wanted to impact and all these things.
41:03
Um, so I think, like I said to my friend, like meeting all these people again in long COVID, at MECFS, a lot of my meetings, people have been lying in bed and that's like I am, like if I hadn't had that lived experience, like it's just so hard to relate, like I'm, like I feel what they're feeling because I've been through it, and so like I don't know if this is at all helpful.
41:23
But my best friend did come on the journey with me.
41:26
You know, that's the hope, is like I would have looked completely normal to her because I did have an invisible condition that at the time didn't have the signs we now know there's lots of biomarkers, we have so much evidence for these autoimmune diseases, but at the time we didn't and she just believed me and was empathetic and so maybe she is like the hope, you know, that she could see me looking normal and just have empathy and come on a journey with me.
41:52
So you know, I think that's I don't know if that's at all insightful, but you know, we do have opportunities to go on journeys with people and if we don't have the evidence that things are existing or real, we understand them. When you love someone, you can go on those journeys with them and you can also see the impact of it on their life, which is very hard to refute. So yeah, I don't know how to end it, but I know that my friend did come on that journey with me when it seemed madness what I was going through and she never once didn't like just go on it with me and accept it and help me and see anything she could do. And no one's perfect, but you know, she just yeah she's the hope.
Tim Reitsma
42:35
She's the hope. Okay, so we got to get her contact information. I'm just joking it's like she's, she's gonna, you know, have a little startup of her own, just being the hope buddy and um yeah, but isn't that?
42:48
that's awesome. The words that are sticking out to me is believe, empathy, curiosity and how we can end a stigma. I love that you went there, because often it's someone who speaks from it from a first person perspective. But I love your perspective of hey, if you're on the opposite side, if you're listening to somebody's story, or maybe you're a partner and somebody's going through something, or your child is, or your friend is, just believe that something's going on. Have empathy and compassion and get curious. There's conditions. I put together a list of a small list of 250 plus conditions up on my website and with definitions and online communities and online accommodations. I have heard of most of them. So if somebody comes to you and says, hey, this is what I'm going through, this is what they think the diagnosis is get curious, don't dismiss it. Believe someone.
Jess Dove London
43:56
It's amazing. Exactly, If you don't understand I mean, that's everything, isn't it If we don't understand someone else's story, like if you can't begin understanding, then you just don't have that ability.
Tim Reitsma
44:09
But I think most people do no-transcript.
Jess Dove London
44:40
I wish I was a fly on the wall in that conference.
Tim Reitsma
44:42
That's amazing, jess. I appreciate you coming on sharing a bit about your story as a mom and caregiver to a son with CP and building this amazing product.
Jess Dove London
45:01
If someone wants to learn more, where would they go? Yes, so if you are in one of our current conditions or upcoming conditions, you can go to our website, turntuai. We're also on the App Store so you can just search Turntu and it will come up health breakthroughs. And, yeah, we are going to go to many conditions quickly over the next sort of three, six to nine, 12 months. So more is coming quickly because we know that it's resonating and people are coming back and finding value. So, yeah, they can do that or they can reach out to me. I'm on LinkedIn. Yeah, I'd love to connect with anybody. If there's any advocates in the audience who are passionate about us coming to their condition, reach out. That's how we've grown in conditions is. Advocates are leading the way, so we just really lean into lived experience.
Tim Reitsma
45:49
Amazing and I'll put all those links in the show notes and when we shared out on social as well, and I've met a few people on your team now and just amazing. I love what you're doing and I love the advocacy work and wanting to change this archaic health system that we have. You know, I'm in Canada, you're on the other side of the world, but we share something in common, which is, you know, the health condition or the health journey is challenging, and so thank you for coming on. I appreciate that.
Jess Dove London
46:21
Thanks, tim, it's been great.
Tim Reitsma
46:23
And for those who are listening, tell me what you think about this episode. Please head to invisibleconditioncom, the website. You can leave feedback there, to invisibleconditioncom, the website. You can leave feedback there. But what really helps this show is if you head to your podcast platform Apple Spotify, wherever you get your podcast and subscribe. Leave a rating, leave a comment there, a review, but also subscribe to the newsletter. That's how you're going to know not just about podcast episodes, but also written interviews and new articles and just new things going on with Invisible Condition. And one last thing this show is made possible by people who donate. Donate to keep this show and keep this project going. So if you have the means, please head to the website and consider donating there. So with that, I hope everyone has an amazing day and we'll talk to you soon.
