Dinkykts EDS Diaries

Dinkykts EDS Diaries Katie raises awareness about Ehlers-Danlos Syndrome; in particular the Classical type.

I honestly can’t quite believe this 🥹💗After more than 13 years of raising awareness of Ehlers-Danlos syndromes through D...
31/08/2026

I honestly can’t quite believe this 🥹💗

After more than 13 years of raising awareness of Ehlers-Danlos syndromes through DinkyKt’s EDS Diaries, sharing my own experiences, creating content, writing books and raising money for Ehlers-Danlos Support UK, I’ve been nominated for a Love Barrow Award 2027. 🏆🦓

There have been so many ups and downs over the years, but moments like this make all the hard work, fundraising and awareness raising feel so worth it.

Just being nominated and having all those years recognised means more to me than I can properly put into words.

Thank you so much to whoever nominated me. I’m genuinely really touched. 💗

Katie has been nominated for raising awareness of Ehlers-Danlos syndromes through her DinkyKT social media channels. Drawing on her own experience, she has created colouring books and merchandise that raise both awareness and money for charities supporting people with EDS and their families. Kind, caring and selfless, she is always smiling.

Sorry for the late-night post everyone! 🌙💗 I’ve finally managed to get my latest little EDS update uploaded, so I wanted...
30/08/2026

Sorry for the late-night post everyone! 🌙💗 I’ve finally managed to get my latest little EDS update uploaded, so I wanted to share it with you while it was fresh in my mind.

In the video I chat a bit about how I’ve been doing recently, what’s been going on health-wise, and where things are at for me at the moment with my Ehlers-Danlos Syndrome. 🦓

If you have a few minutes, I’d really appreciate you giving it a watch. And if you can like, comment or share it too, that really helps me keep spreading awareness through Dinkykts EDS Diaries. 💕

🎥 Watch here: My EDS Update 🦓💗 | How I’m Doing Right Now
https://youtube.com/shorts/ABPjS6fqK-g?feature=share

Thank you as always for being here and supporting the page. 💗🦓

A little update on how I’m doing with my Ehlers-Danlos Syndrome and...

💛 A little update after today’s ARCH appointment…One of the lovely ladies from the Advanced Respiratory Care at Home tea...
17/08/2026

💛 A little update after today’s ARCH appointment…

One of the lovely ladies from the Advanced Respiratory Care at Home team came back to see me today and stayed for around an hour and fifteen minutes.

We talked a lot about anxiety, coping strategies, relaxation and some of the things I’ve experienced over the years. I’ll admit, by the end I was absolutely exhausted and emotional, and I did have a little cry. 🥺

I genuinely appreciate how much they’re trying to help me, and I know everything is coming from a good place. There were definitely things from today that I think could be helpful, particularly making a conscious effort to have some proper relaxation time during the week. 💛

At the same time, I came away feeling a little conflicted.

I’ve lived with Generalised Anxiety Disorder since my 20s and over the years I’ve already been through counselling, CBT, medication and hypnotherapy. Some of today therefore felt like going back over very familiar territory.

I absolutely know that anxiety can affect my breathing. When I’m anxious about something during the day, of course my breathing can become more difficult. Equally, waking suddenly after a sleep apnoea episode can understandably make me anxious.

But anxiety doesn’t take away the fact that I also have very real physical respiratory problems, including restrictive lung disease associated with my kyphoscoliosis.

I think that’s the balance I’m struggling with at the moment. I’m completely open to support for the emotional impact of everything I’m going through, because goodness knows this respiratory journey has taken its toll! But I also desperately want to understand what is happening physically and what can realistically be done to help.

Sometimes when you’ve lived with complex health problems for your entire life, you’re not starting at square one. You’ve already tried the splints, equipment, physiotherapy, occupational therapy, adaptations, pacing, different mattresses, different treatments and countless other things. You learn your own body incredibly well along the way.

Today has left me very tired and with lots going around in my head, but I’m taking the useful bits from the appointment and giving myself permission to question the bits that don’t quite fit.

Thankfully, I finally see the specialist respiratory consultant in September, and I’m hoping that appointment will help bring all these different pieces together. 💛

For now, I think one of those relaxation timeouts might be exactly what I need! 😴😂
:::

What a busy weekend! 😴💙Yesterday I headed into town to catch some of the Soapbox Derby, followed by the football, and to...
16/08/2026

What a busy weekend! 😴💙

Yesterday I headed into town to catch some of the Soapbox Derby, followed by the football, and today we took my lovely niece to the Dockside Festival. 🥰

I took this photo of these gorgeous alpacas while we were there today and I just had to share it! 🦙📸

It’s been such a lovely couple of days, but I’m definitely feeling it now. My joints were playing up through the night so I didn’t sleep particularly well, and tonight I’m feeling very tired and quite overstimulated after all the noise, crowds and activity.

So I think the rest of the evening is going to be a very quiet one while I recharge my batteries. 💗

Busy weekends can be lovely, but sometimes the body sends the invoice afterwards! 😅

12/08/2026

I’ve been reading the recent Times opinion piece by Kathleen Stock, “Why are young women using walking sticks?”, and I wanted to say something about it because, as somebody who has lived with Ehlers-Danlos syndrome for my entire life, some of the language and assumptions in the article really concern me.

The article questions why increasing numbers of young women appear to be using walking sticks, wheelchairs and other mobility aids, and refers to young women having “strangely unstable bodies that intermittently require support”.

It also talks about seeing young wheelchair users stand or walk, almost as though that in itself should make us question whether they really need the wheelchair.

But this completely overlooks something incredibly important:

Not all wheelchair users are unable to walk.

Ambulatory wheelchair users exist.

Somebody might be able to stand, take a few steps, walk around their home or manage a short distance, yet still need a wheelchair for longer distances, pain management, fatigue, joint instability, breathlessness, falls prevention or simply to conserve enough energy to actually participate in life.

Seeing somebody stand up from a wheelchair tells you absolutely nothing about whether they genuinely need that wheelchair.

The same applies to walking sticks, crutches, braces and other mobility aids.

A person using a walking stick one day and not the next does not automatically mean they do not need it.

Chronic illnesses and disabilities can fluctuate.

Symptoms can change from day to day and sometimes even from hour to hour.

One of the parts I found particularly uncomfortable was the suggestion that, in some groups, young people may be being told to focus more on unpleasant feelings because those feelings might make them feel “special” or “excused from the pressures of life”.

Later, the article says:

“We owe it to young people to challenge neuroticism and fear.”

And towards the end, mobility aids are referred to as “props”.

That language matters.

A walking stick isn’t a prop when it stops somebody falling.

A wheelchair isn’t a prop when it enables somebody to leave their house.

Braces aren’t props when they support unstable joints.

Mobility aids are tools. They can provide safety, independence, pain reduction, energy conservation and freedom.

If somebody genuinely wants to understand why more young women are presenting with symptoms of conditions such as EDS, HSD, POTS, fibromyalgia or chronic fatigue, surely the answer is to speak to the medical professionals who are actually looking after these women.

Speak to the specialists.

Speak to researchers.

Speak to physiotherapists, occupational therapists and other healthcare professionals who work with people with chronic illnesses and disabilities every day.

And most importantly, speak to the people actually living with these conditions.

Ask questions.

Listen.

Try to understand.

Be curious rather than judgemental.

Because looking at somebody from the outside and deciding what their body should or shouldn’t be capable of shows a real lack of understanding about disability.

Not all disabilities are visible.

Not every wheelchair user is completely unable to walk.

Not every person with a chronic illness looks ill.

And somebody having a good hour, a good day or managing to do something once does not tell you what their body is dealing with afterwards.

Something else that I think gets completely overlooked in conversations like this is what happens behind closed doors.

You might see somebody out with a walking stick, crutches or a wheelchair for an hour or two.

What you don’t see is what it took for them to get there.

You don’t see the pain afterwards.

You don’t see the exhaustion.

You don’t see the days when they cannot go out at all.

You don’t see the falls, unstable joints, sleepless nights, hospital appointments, medical procedures, frustration or tears.

You don’t see the recovery time after doing something that might look completely ordinary to everybody else.

And you certainly don’t see how difficult it can be emotionally for somebody to accept that they need a mobility aid in the first place.

For me personally, mobility aids have always been part of my life. I’ve never really known anything different.

But that isn’t everybody’s experience.

For somebody who has previously walked everywhere independently, suddenly needing a walking stick can be a huge change.

Then perhaps it becomes crutches.

Perhaps eventually they need a wheelchair.

That adjustment can be incredibly difficult.

There can be grief involved.

Fear.

Anger.

Embarrassment.

Worry about losing independence.

Worry about how strangers will look at them.

Worry that people will judge them because they are “too young” to be disabled.

And worry that somebody will accuse them of faking because they happened to stand up from their wheelchair or because yesterday they managed without their stick.

Imagine finally reaching the point where you accept that a mobility aid could give you some independence back, only to open a newspaper and see mobility aids described as “props”.

We simply do not know what another person has gone through to reach the point where we happen to see them.

There absolutely can and should be sensible conversations about social media, health misinformation, self-diagnosis and making sure people receive thorough, evidence-based medical assessments.

But those conversations can happen without dismissing people with chronic illness, without assuming someone is exaggerating because their disability fluctuates, and without making judgements based on what somebody looks like.

To me, this article demonstrates exactly why disability awareness is still so important.

Instead of asking:

“Why is that young woman using a walking stick?”

as though there must be something suspicious about it, perhaps the better question is:

“What might that young woman be living with that I cannot see?”

Less judgement.

More listening.

More understanding.

And above all, more empathy and compassion. 💙🦓

05/08/2026

💛 A little respiratory update…

Today the ARCH Team (Advanced Respiratory Care at Home) came to see me at home. They spent around an hour with me, and it was actually a really positive appointment.

It was lovely to meet a physiotherapist and an occupational therapist who seemed to understand both my Classical Ehlers-Danlos Syndrome and my kyphoscoliosis. We talked through my breathing, my sleeping situation, and the challenges I’m facing day to day.

They work closely with the specialist respiratory consultant I’m finally seeing in September, and hearing such positive things about him from yet another team has definitely helped reassure me. Apparently he’s very down to earth, regularly sees patients with complex conditions, and is happy to answer any questions.

We also spoke more about my sleep apnoea and the possibility of CPAP/BiPAP. I’m still feeling very uncertain about trying it again after how much I struggled with CPAP previously. My concerns aren’t simply about wearing a mask. They’re about my claustrophobia, how much I move in my sleep because of my joints, needing to get up during the night, and struggling to manage the mask independently. They’re all things I’ll discuss further with the specialist in September.

I’m still a long way from having all the answers, but for the first time in a while, I genuinely feel like I’m surrounded by professionals who are looking at the bigger picture rather than just one diagnosis at a time. Between my GP, the oxygen clinic, the ARCH Team and now the specialist consultant I’ll be seeing soon, I’m finally starting to feel hopeful that the right people are working together.

Thank you, as always, for following my journey and for all your support. It genuinely means more than you know. 💛

💜 Just a little update from me…Today was my hospital appointment for my blood tests. Thankfully, they managed to get the...
31/07/2026

💜 Just a little update from me…

Today was my hospital appointment for my blood tests. Thankfully, they managed to get the blood they needed first time, and it was actually the quickest blood test I’ve ever had! Now it’s just a case of waiting for the results, as they’re checking everything to make sure I’m okay.

It’s also been exactly one week since we said goodbye to my beautiful Pixie. 🐾💔 I still miss her more than words can say. The house feels different without her, and there are moments when it still doesn’t feel real. She’ll always be a huge part of my heart.

Thank you to everyone who has sent kind messages, comments and love over the past week. Your support has meant so much to me and my family. 💜

Hopefully, as time goes on and I’m feeling a little more like myself, I’ll be back to posting more regularly. Until then, thank you for sticking with me. Sending love to you all. 💜🐾

28/07/2026

Just a little life update from me. 💙

I had my wellness check today and, thankfully, everything was okay overall. They did struggle a bit though! The blood pressure cuff wouldn’t fit my arm properly, and then they couldn’t get any blood from me - which is unusual for me. So I’ll be heading to the hospital on Friday to have my blood tests done instead.

Next week, the Advanced Respiratory Care at Home team are coming to see me, so I’ll keep you all updated on how that goes.

Last week, I also received copies of my medical records from when I was born. It’s been fascinating reading through them and learning more about those very early days of my life. There have already been a few things that have answered questions I’ve wondered about for years, so I’m looking forward to sharing some of what I’ve discovered.

Emotionally, I’m still really struggling with losing Pixie. Grief isn’t something you can rush, and I miss her so much every single day. 💔 Tomorrow we’ll finally be laying our beautiful girl to rest, which I know will be both a difficult and important day for us as a family.

I’m hoping that once I’m feeling a little more like myself, I’ll be able to post more regularly again. Thank you for sticking with me, and for all the kindness, support and encouragement you’ve shown - it truly means more than you know. ♥️

I really miss my beautiful little girl 😢 I just feel so lost and lonely without her. Whenever I would feel sad or just u...
26/07/2026

I really miss my beautiful little girl 😢 I just feel so lost and lonely without her. Whenever I would feel sad or just upset, she was always there comforting me in her own sweet way. Just like this in the photo of her snuggled up to me on my bed and this was taken just over a week ago; last Saturday night. 💔

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