Dinkykts EDS Diaries

19/09/2025

Hi everyone,

So today I had a chat with the team at Sheffield EDS Clinic with one of their Genetic Counsellors. We had a good chat as it’s been a few years since we last spoke although she’s not one I’ve spoken to before. They’re publishing a research paper which will be going in the medical journal on around 20 chosen patients and they have asked me if I would be okay with that, and like I said to her, I’d be very happy for this, anything to help raise awareness and understanding. So it’ll be anonymous but I’ll probably recognise my medical history, features and photos that they took of me from my visit there. She said it might even be public so we’ll be able to see it but I’m definitely going to ask to see it somehow because it’ll be really interesting to see what’s been said.
She’s also going to speak to one of the consultants about what to do with my respiratory/spine situation; whether that’s sending a letter to my GP or referring me themselves to a specialist consultant. I imagine they’ll have lists of specialists who have knowledge of both EDS and Kyphoscoliosis together. I also told her about my awful dislocation in January. I told her that I have physio usually once a month too which helps me and that they keep an eye on me.
So I’ll hear back from her soon and will receive my consent forms to sign and email back. 🙃🙂 it’s so wonderful when you’re talking to someone who actually knows and understands EDS and the complexities it can bring. 👩🏻‍🦽🦓🖤

17/09/2025

Hi everyone, hope you’re all keeping well and that this week is treating you with kindness so far.
I woke up to an unexpected message from the team at Sheffield EDS Clinic asking me to contact them so I did.
They want to talk to me about something (they didn’t say what) and want to see how I’m doing etc. So I’m trying not to worry 😂 easier said than done when you have GAD (Generalised Anxiety Disorder). The last time I spoke to the team was back in 2021 about finding out which type of EDS I actually have, as back when I was diagnosed back in 1985, they didn’t know much or that they even had types. They did also say that because I have a mutated gene, the other part they’ve never seen before which makes me even rarer. So I’m wondering if it’s to do with this as I’m on the 100,000 genome testing panel for rare diseases which is how they found out which type of EDS I have.
Off topic to EDS but I’ll share a new SHORT video which I’m super proud of myself for. 🖤

📺 Watch here: Barrow Town Hall Guided Tour 2025

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

15/09/2025

EDS Pain Worse Than Cancer? Dr. Tennant's shocking revelation about Ehlers-Danlos Syndrome pain that even doctors fear. A must-read for anyone in chronic pain communities. 💔

13/09/2025

Tonight I managed to do myself an omelette with charcoal cheddar so I assure you it’s not mouldy 😂 and I had ketchup with it as always!! My Dad does the heavy lifted stuff and cuts my food for me and I was doing some of my leg exercises while it was cooking in the pan. Multitasking. 🤗 xx

11/09/2025

10/09/2025

✨ Life update ✨
I just wanted to share a quick little video to let you know how I’ve been doing lately 💜 Fatigue has been hitting me really hard recently (especially since turning 40!), and it’s been affecting both my health and how much I’ve been able to post.

It’s not all doom and gloom though – I’m still here, still creating when I can, and still grateful for this community 💕

If you’ve got any ideas for videos or posts you’d like to see on here (or over on my YouTube channel 🎥), please let me know in the comments ⬇️ I’d really love to hear from you!

👉 Watch the full video here:
Thanks so much for watching and for always supporting me 💜🦓

02/09/2025

✨ Sorry I’ve been a little quiet on here the past 6 days! I’ve had a lot going on… My sister treated me and my niece to a belated birthday trip to Blackpool 💕 We packed so much in and had the best time!

Afterwards I had a busy weekend too, so as you can imagine, I’ve been completely exhausted and still recovering now. Thankfully, no major changes with my health – just the usual bits along with some extra fatigue from everything. I’m sure I’ll be back to my full self again soon.

But let me tell you – I might not have done my usual exercises, but I did have a few goes at the camel derby game in Coral Island 🎠🐫 (that counts, right? 😜😂). Clearly my last arm strength test was wrong, because look – I can lift a car with one arm 💪🏼🤣 And the absolute highlight… dancing with my niece on the most famous dance floor at the Blackpool Tower Ballroom 🥰 Pure magic.

Vlog 🎥 will be online in due course!!

Thank you all for being patient while I’ve rested – sending love to you all 💫🦓👩🏻‍🦽🖤

26/08/2025

🐾💜 New video alert! 💜🐾

Welcome to a brand-new mini-series I’m calling EDS Through My Pet’s Eyes.
In this episode, it’s Pixie vs. The Zimmer Frame 😹 She has a habit of sprawling out right where I need to walk, turning my mobility aid into an obstacle course!

It’s a lighthearted look at life with Ehlers-Danlos Syndrome, but also a reminder of how much comfort and companionship our pets bring — even when they make things tricky. 💕

🎥 Watch the full video here: Pixie vs. The Zimmer Frame!

POV: My cat thinks she’s an extra obstacle in my disability journey 🐱💜Welcome to EDS Through My Pet’s Eyes – today’s episode: Pixie vs. The Zimmer Frame!Sh...

25/08/2025

On Saturday we went to Coniston where The Bluebird Cafe is and I got to put my feet in the water. Immediately my feet turned red due to how cold the water was (it was a bright day but not really any sun) I was just desperate to paddle my feet even just for a few minutes!! 🥰

20/08/2025

✨ EDS IN 60 SECONDS ✨
I’ve put together a short video to give a quick, clear explanation of Ehlers-Danlos Syndrome — the daily challenges, the hidden realities, and why awareness matters. 💜🦓

Even in just one minute, you can learn so much about life with EDS.

🎥 Watch here 👉 EDS In 60 Seconds
https://youtu.be/7M6UX4udJuY

🌐 Learn more: https://www.worldofdinky.co.uk

✨ EDS IN 60 SECONDS ✨A quick, clear look into life with Ehlers-Danlos Syndrome — the challenges, the realities, and why awareness matters. Because even in ju...

19/08/2025

✨ When I was at a residential college for young disabled people, we were taken to this local venue. You can see the doors in the photo — big, heavy glass ones.

The staff member in charge decided that I should push myself through them on my own. But everyone knew I couldn’t even push myself properly, let alone open and hold heavy doors at the same time.

The result? I hurt both my arms. He’s lucky I didn’t do any serious harm like dislocations or subluxations, but he definitely caused muscular injuries. Other staff and students tried to warn him it was too dangerous, but he didn’t listen. My personal tutor was furious when she found out. After that, I refused to be in his classes (and other students did too).

All in the name of being “independent.”

💡 But here’s the truth: forcing someone into unsafe situations isn’t independence — it’s negligence.

👉 Enabling a disabled person to be independent is about removing barriers, not taking away choice.

It means:
• Access → making sure environments, services, and opportunities are inclusive and usable.
• Support → providing tools, adaptations, or assistance that empower them to do things their own way.
• Respect → recognising that independence doesn’t always mean doing everything alone—it means having control over decisions and how support is given.
• Equality → giving them the same chance to live fully, contribute, and thrive as anyone else.

At its heart, independence is about dignity, choice, and control.

🌱 And I often wonder how many disabled people have been put at risk in the name of “independence,” simply because someone didn’t listen.

18/08/2025

🌊💭 Accessibility at the Beach

Yesterday, I went to one of our local beaches. For those who don’t live nearby, my town is actually surrounded by beaches — yet sadly, not one of them is accessible to me.

Me and my mum sat on a bench watching my dad wander down to the water. I felt happy for him and for everyone else enjoying themselves on the sand and in the sea… but at the same time, it left me feeling envious.

It’s hard when you see people taking something for granted that you simply cannot access. And yet, they have every right to enjoy it — just as I should have that right too.

What makes it harder is knowing that in other places, people have worked out how to make beaches accessible without harming the environment. So why can’t it happen here?

I know I’m not the only one who feels this. For many of us with disabilities, places that should bring joy and calm end up reminding us of what we’re excluded from.

Everyone deserves the chance to feel the sand, to be near the water, to be included. Until then, we’ll keep raising awareness. 💙