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In a recent study: 66% of people with hEDS/HSD (and other forms of EDS had head and neck problems • headaches • neck pain • facial pain • neck instability • or a combination of these Yep - had headaches and migraines my whole life.

When I was growing up, my mum used to say to me “you’re just creating your symptoms. You’re thinking about it so much, you’ve created it” So I created IBS, pain, migraines, POTS and so on. Another way to tell me it’s all in my head! Words like ‘just’ and ‘only’ minimize real

Anyone else had the EDS Tricks You Moment. We’ve pushed through pain or gone beyond our limits, maybe without realising it at the time, only to find we pay the price a couple of days later. The number of people who have said to me, “I felt OK at the time, it didn’t hurt, but

Headache has been characterized as "one of the most common and disabling types of pain in hEDS according to one study. It is often the first presenting symptom and cause of disability in EDS/HSD. My headaches started at a young age. Migraines at aged 19 - I’d just started work

Have you ever shared something deeply personal… and then been met with silence? Earlier this year, I reconnected with a colleague from my old corporate life. When they asked what I do now, I decided to be totally open and honest — not just about my work, but the chronic illness

Does your skin itch at the slightest touch of a clothing label? You’re not imagining it. In EDS, even tiny irritants like seams or tags can feel unbearable — because our skin and nervous system are extra sensitive. Anyone else been cutting off their labels in this heat?

“EDS comprises a group of #genetic conditions with different types of genetic causes due to altered #genes within the extracellular matrix of #ConnectiveTissues. #hEDS is the only type of #EDS that does not have a known genetic marker, yet.”: buff.ly/aeGpJkD from Jeannie Di Bon

But you look fine… Why are you in a disabled parking space? Why do you need to use the lift? Why can’t you walk that far? Too many questions that we should not have to answer. We don’t need visible bruises or scans to prove your pain. Even if others don’t understand it, my

We need to hear comments like this more often in our chronic illness community.

EDS can be called called rare, but 🧐 It might not be as rare as we think—many people go undiagnosed for years. We still don’t know the actual prevalence of hEDS & HSD. We have estimates. Lack of awareness doesn’t mean lack of existence. Just because the doctors aren’t aware of

Excited to catch up with the London Hypermobility Network next week at this event, plus a catch up with BendyBrain: Dr Jessica Eccles 🙌.

✨What does normal even feel like? When your baseline is daily pain, fatigue, and instability, it’s easy to forget that most people don’t feel like this.

Some days it’s strength. Some days it’s rest. Both are valid. It’s unpredictable with chronic illness. I’ve found listening to what my body needs is the most important thing.

If you’re like me and hold off taking migraine meds, here’s why we shouldn’t do that from Dr Katy Munro, migraine specialist. She spoke at our Zebra Club members meet up this week. “If you do get a migraine attack, get on it quickly. The trouble with waiting to see if it's a

Have you ever been told you’re too sensitive? I grew up feeling like it was my fault that I was sensitive. It felt like my weakness versus others strength. But 1.Being aware of your body’s signals is strength, not weakness. 2.Noticing discomfort early helps prevent injury or

I did a thing yesterday Cardiff University 🎉🎉🎉🎉. Very proud to graduate with a Master of Science in Pain Management from the School of Medicine. My research - on EDS & HSD pain.

If you’ve experienced fear of movement or exercise, first of all, you are not alone if you are experiencing this. In my 17 years, I've worked with thousands of people living with EDS and HSD, and this fear is something I see and hear all the time. Sadly, it is a cycle that

You’re so bendy! Can you do the splits? Ever been asked that question 🙋‍♀️? Hypermobility is often mistaken for a fun talent—but for many of us, it’s linked to chronic pain, fatigue, and injury. It’s not just about joints—it’s about connective tissue throughout the whole body.