Hypermobile Ehlers-Danlos Syndrome Misdiagnosis Explained
If you’ve experienced Hypermobile Ehlers-Danlos Syndrome misdiagnosis—hearing “Have you considered that it might be anxiety?” while battling
Living with complex, invisible conditions like Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) can feel overwhelming. For many, it takes years—sometimes up to a decade—to get a diagnosis. In the meantime, symptoms are often dismissed, misdiagnosed, or misunderstood, leaving people feeling isolated and unsupported.
That’s why we created the ConnectED Health Assessment App. This world-first innovation helps you document your symptoms in a structured, evidence-based report—so you can walk into your next medical appointment feeling seen, supported, and empowered to advocate for your care.
HEDS is a connective tissue disorder where the body’s scaffolding—what supports your joints, skin, and organs—is more stretchy or fragile than it should be. It can cause joint pain, fatigue, digestive issues, and more. Often misunderstood, hEDS leaves many people undiagnosed for years—feeling dismissed, in pain, and searching for answers.
MCAS is a condition where the body’s mast cells—normally there to protect you—become overreactive and release too many chemicals at the wrong time. This can cause unpredictable allergic-type reactions to everyday things like food, heat, or stress, often without a clear trigger. It’s hard to diagnose and often leaves people feeling confused, reactive, and misunderstood.
POTS is a type of autonomic dysfunction that affects the body’s automatic processes—like heart rate, blood pressure, and circulation. When you stand up, blood pools in the lower body and the heart races to compensate. This can cause dizziness, rapid heartbeat, fatigue, and even fainting. POTS is often misdiagnosed or dismissed as anxiety, leaving many without the support they need.
ConnectED was founded by Tracy Finnegan after years of living with unexplained, debilitating symptoms caused by hypermobile Ehlers-Danlos syndrome. Like so many others, Tracy’s search for answers was long and frustrating—marked by misdiagnoses, dismissals, and a lack of understanding from the medical system. When she was finally diagnosed, she realised her story wasn’t unique—there were countless others on the same difficult path.
Tracy created the ConnectED Health Assessment App to help change that. Her goal is to empower individuals with complex conditions like hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, and mast cell activation syndrome to feel seen, heard, and better equipped to advocate for their health. Through ConnectED, Tracy is also working to raise awareness and educate healthcare professionals—bridging the gap between lived experience and clinical understanding, so no one else has to feel lost or invisible on their journey to diagnosis.
If you’re living with confusing, overlapping symptoms—like chronic pain, fatigue, dizziness, or allergic-type reactions—the ConnectED Health Assessment App was created for you. It was designed to support people facing the diagnostic complexity of conditions like hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS).
The app guides you through a comprehensive symptom questionnaire and turns your answers into a structured, evidence-based report. While it doesn’t provide a diagnosis, it helps you clearly communicate your experience with your healthcare provider—bridging the gap between what you feel and what they see.
Because you deserve to be understood, supported, and empowered every step of the way.
If you’re living with symptoms that point to hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), or mast cell activation syndrome (MCAS), the ConnectED Health App is here to help.
Download the app today via the Apple App Store or Google Play to turn your symptoms into a clear, evidence-based report—so you feel seen, supported, and empowered to advocate for your care.
Download the App today.
Developed with input from medical professionals and people with lived experience.
Your responses are analysed to identify symptom clusters and potential links to rare conditions such as hEDS, POTS and MCAS.
So you can have more productive, informed conversations about your health.
Giving individuals the tools to advocate for their health.
Whether you’re just beginning your health journey or have been searching for answers for years, ConnectED is here to support you—every step of the way.
Firstly may I say thank you for the work that you are doing in this space and the development of an application for this for all those impacted by hEDS, MCAS and the dysautonomias POTS.
I and all my family members have hypermobility, MCAS and dysautonomia.
Whilst I have not personally used the App, I am aware that the collaboration came about with assistance from the Australian POTS Foundation of which I am a member and hope to do some more active work in that space as a volunteer in the future. After a lifetime of symptoms, I was diagnosed with hEDs at Professor Dennis Lau’s clinic in Adelaide at the age of 57 and then quickly became aware of all the interconnected conditions.
I am especially interested in reaching out to the founder Tracy Finnegan of connectedhealth.au to gather some further insights in relation to her experience in using AI applications in this space.
And secondly I was particularly interested in one Instagram post in particular on 13 December 2024 in relation to collagen metabolic pathways. If anyone there has more information on this I would love to follow that up as well. I have downloaded and read the paper but would appreciate any insights in relation to information contained in the Instagram post. Thank you so much.
Candy Evans
If you’ve experienced Hypermobile Ehlers-Danlos Syndrome misdiagnosis—hearing “Have you considered that it might be anxiety?” while battling
Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common form of EDS, but it’s also the most underdiagnosed. Because symptoms vary widely and often seem unrelated
Living with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) can feel like fighting a battle no one else can see.
The ConnectED Health Assessment App is a world-first innovation designed to help you understand your hEDS, MCAS, or POTS symptoms—so you feel seen, speak up and advocate for your care with your doctor.
ABN: 31 668 619 314
The ConnectED Health Assessment App is a world-first innovation designed to help you understand your hEDS, MCAS, or POTS symptoms—so you feel seen, speak up and advocate for your care with your doctor.
ABN: 31 668 619 314
ConnectED | Web design by Bayside Website Design | Digital Strategy by Sustainable Marketing Services