Pinned
I tweet about Ehlers-Danlos, hypermobility, dogs and flowers in that order.🦓💪🐶🌹
Jeannie Di Bon
12.7K posts
Jeannie Di Bon
@jdibon
Hypermobility Specialist | Movement Educator | Author of "Hypermobility Without Tears" | jeanniedibon.com | Founder & CEO of The Zebra Club
- How did it come to this? People commenting that preparing for medical appointments feels like preparing for a trial. Preparing evidence, hoping to convince the jury! People even stop going to appts because it’s just too stressful.
- My husband has had POTs like symptoms since he had Covid. He saw a cardiologist recently as symptoms getting worse. The consultant said “no, you can’t have POTs as only teenage girls get that”. The ignorance is shocking. So wish I’d been at the consultation 😡
- Many people are sadly told their racing heart rate & fainting spells are due to anxiety. I know I was. I was offered counselling. Turns out I had POTs - like so many of us. This misdiagnosis can be damaging as people miss out on important treatments that can really help.
- I don’t think it is understood how much prep goes into attending a medical appointment for chronically ill patients. It takes planning, organising support, ensuring adequate rest is planned before & after the appointment. It’s not just the physical aspect either 1/2
- It’s disheartening to see EDS dismissed as “trendy.” EDS is a complex, lifelong connective tissue disorder that often goes undiagnosed or misdiagnosed for years — sometimes decades. What might look like a “trend” is actually long-overdue recognition of a condition that was
- “POTs patients are not deconditioned. High level athletes can have POTs” Dr Nick Gall, EDS Cardiologist. I heard it straight from the expert. Let’s stop guilting POTs patients. POTS is a disorder of the autonomic nervous system, not simply a result of deconditioning.
- Two of my complex CCI patients were told their disabling symptoms were anxiety 😬. Unbelievable that both of them were told their seriously disabling symptoms were caused by anxiety or were psychosomatic at some point by doctors. Now l've seen and heard all about their
- When patients present with seemingly unrelated issues like pain, sprains, strain injuries, inflammations, digestive issues, breathing issues, pneumonias, allergies, heart palpitations, headaches, fatigue, unexplained bruising (my history), why is no one thinking this is odd 🫤.
- I read a paper that found half of patients surveyed had a 14 year delay in diagnosis of EDS / HSD. A quarter had a 28 year delay. This constitutes the longest delay in diagnosis in rarer diseases according to this research. hEDS isn’t rare but clearly it’s rarely diagnosed 😞
- “90% of EDS patients report chronic pain according to research, with pain often being the first symptom. Yet, many are still told it’s ‘just anxiety’ or ‘in their head.’ Why isn’t this fact more widely known? EDS pain is real, complex, and deserves to be taken seriously.
- When we go to doctors saying we have pain, we’ve learnt to live with it, it’s become normalised. I think the doctors expect us to crawl in on hands and knees screaming. But that’s not socially acceptable. So we hide our pain, appear normal. Then we hear - you don’t look sick.
- Because I live in our world of EDS community, I sometimes forget it’s still not well known in healthcare. Just been for a consultant appointment, casually mentioned I had EDS. Got a blank look. Said Ehlers-Danlos Syndrome. Blank look. But she did ask what it was.
- A paper in my MSc research revealed the average delay in diagnosis for EDS or HSD is 14 years. For a quarter of patients, it’s 28 years. Mine? 35 years. That’s not a delay—it’s a lifetime of being misunderstood, dismissed, or misdiagnosed. According to this research, this is