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Dinkykts EDS Diaries
United Kingdom
Приєднався 8 тра 2021
Hi everyone!!
So, I'm Katie! I like to raise awareness about Ehlers-Danlos Syndrome (EDS). It’s a rare, complicated multi-systemic syndrome. You’ll rarely see me without a smile! I hope I can help you learn more about EDS.
🖤🦓👩🏻🦽🦓🖤
So, I'm Katie! I like to raise awareness about Ehlers-Danlos Syndrome (EDS). It’s a rare, complicated multi-systemic syndrome. You’ll rarely see me without a smile! I hope I can help you learn more about EDS.
🖤🦓👩🏻🦽🦓🖤
What To Do Next…?
Hi and welcome back to my channel. In today's video, we chat about what to do next with regard to Dinkykts EDS Diaries. I'd love to hear your thoughts. Please check out our website at www.worldofdinky.co.uk for much more!
Love DinkyKt
CGI Snake by Chris Zabriskie is licensed under a Creative Commons Attribution 4.0 licence. creativecommons.org/licenses/by/4.0/
Love DinkyKt
CGI Snake by Chris Zabriskie is licensed under a Creative Commons Attribution 4.0 licence. creativecommons.org/licenses/by/4.0/
Переглядів: 59
Відео
My Latest Physio Appointment
Переглядів 68Місяць тому
Hi everyone, In today's we are talking about my latest physiotherapy appointment with some lovely footage included. Please check out our website for much more including our online store where we donate a small % from each order at... www.worldofdinky.co.uk Love DinkyKt
My Recent Orthotist Appointment
Переглядів 862 місяці тому
Hi everyone, In today's video, we chat about my new Malleo Dynastab BOA splint. It is to help my ankle that sub-luxes and to help it stop from doing it. Thank you for watching and please check out our website at www.worldofdinky.co.uk where you can find much more including our online store. A small percentage from each other goes towards the Ehlers-Danlos Support UK charity. Love DinkyKt
My Rheumatology Physiotherapy Appt
Переглядів 392 місяці тому
Hi everyone, In today's video, we go to the hospital followed by a chat about how it went. Love DinkyKt Infinite Perspective by Kevin MacLeod is licensed under a Creative Commons Attribution 4.0 licence. creativecommons.org/licenses/by/4.0/ Source: incompetech.com/music/royalty-free/index.html?isrc=USUAN1500024 Artist: incompetech.com/
Disability Pride Month - What is it?
Переглядів 524 місяці тому
Hi, in todays video we talk about what Disability Pride Month is and why I’m proud to be who I am. Please check out our website at www.worldofdinky.co.uk for much more!! Including our online store with lots of great gifts you can buy. Love DinkyKt 🖤👩🏻🦽🦓👩🏻🦽🦓🖤
My Orthotics Appointment
Переглядів 594 місяці тому
Hi everyone, In today's video, it's all about my Orthotics appointment to hopefully help me with my ankle issue. Thank you for watching and don't forget to check out our website for much more... www.worldofdinky.co.uk Love DinkyKt
Dazzle Walk May 2024
Переглядів 624 місяці тому
Hi everyone, today's video we are going back in time but to me for the dazzle walk that we did and you can see what a great time we all had. Thank you to everyone who sponsored both me and my niece Ciara, it is much appreciated by both of us and by the charity. We should be receiving our certificates and medals within the next few weeks. Thank you for watching and don't forget to like, share, a...
International Scoliosis Awareness Day - Wednesday 26th June 2024
Переглядів 544 місяці тому
Hi, Wednesday 26th June is International Scoliosis Awareness Day and here I am sharing my story about having Scoliosis and what it’s like to live with it. Thank you for watching, Love DinkyKt 🖤🦓👩🏻🦽🦓🖤
My Hand Therapy Appt
Переглядів 2885 місяців тому
Hi, so today I went to see the hand therapist again and this is the outcome from two appointments with her. Make sure to watch til the end though to see the conclusion! Thank you for watching and don’t forget to like, share and subscribe! Check out www.worldofdinky.co.uk for more… 🖤🦓👩🏻🦽🦓🖤
My OT (Occupational Therapy) Appointment
Переглядів 856 місяців тому
My OT (Occupational Therapy) Appointment
What Happens When Things Change? Rare Disease Day 2024
Переглядів 668 місяців тому
What Happens When Things Change? Rare Disease Day 2024
Wanting Your EDS/Rare Disease Stories for Rare Disease Day
Переглядів 408 місяців тому
Wanting Your EDS/Rare Disease Stories for Rare Disease Day
One Year Anniversary of My Wheelchair
Переглядів 9 тис.9 місяців тому
One Year Anniversary of My Wheelchair
Our Hopes For Dinkykts EDS Diaries during 2024
Переглядів 4810 місяців тому
Our Hopes For Dinkykts EDS Diaries during 2024
Do I Have Dislocations and/or Subluxations?
Переглядів 4510 місяців тому
Do I Have Dislocations and/or Subluxations?
Talking About Dislocations and Subluxations
Переглядів 4611 місяців тому
Talking About Dislocations and Subluxations
My First Night Using The CPAP Machine - VLOG
Переглядів 1,2 тис.Рік тому
My First Night Using The CPAP Machine - VLOG
Sexy look with the machine, Takes a little getting used to for everyone.
Ha thank you! I ended up not being able to tolerate it.
Hi Katie, so pleased your physio appt went well. I think we need to have much patience with excercise. I'm thinking you are very strong willed and put 100% into anything if it's going to have benifits. There is that saying that from small acorns grow giant Oak trees! That is it with excercise we only notice a difference over a period of time! Sending best wishes. Take care, Neville 🙂🙃🙂🌹🍀🌹
Hi Neville, I’m sorry for the late reply. I’m looking forward to going back to the gym at FGH again. Oh I am when I can be 💪🏼 that’s a very true saying. Take care and thank you for watching. 🤗👟🏥
Keeping everything crossed for the next few weeks Katie! But promising early signs it will help your ankle. 🤞I've had similar supports on one ankle but found them uncomfortable to wear in shoes but hopefully you will do fine with them. 🤞Take care, Neville 🙂🙃🙂🌹🍀🌹
I’m getting used to it now thankfully, it’s a little bit bit big on the ankle/foot part but as long as the straps are pulled tight then it’s good. Not often I have to have things pulled tight 😂 aww yeah they’re not all that great are they, always best with a specifically made for the person if possible. 🦶🏼👟😀
Hi Katie, I'm sorry you haven't heard from me recently 😢 I had what we're calling a 'blip' and had to go to hospital. It's been a slow recovery since returning home 😢 But as you know it cheers me to see you, especially when things go well on your appointments. I am going to catch up now 😊 Sending my best wishes, Neville 🙂🙃🙂🍀🌹🍀
Hi Neville, aww please don’t apologise, I just hope that you’re okay? I was a bit worried about you. Aw thank you, you are always so kind. Take care 🤗☀️🌳♥️
@@dinkyktsedsdiaries5018 And thank you for your kind message Katie. I'm feeling a lot better now thank you. 😊
@@Neville-N ♥️
That's fascinating Katie. Well done for your contribution to Disability Pride Month! I've learnt so much from your channel.👍 Have a nice Sunday....the sun is coming out! Take care, Neville 👏🦓👏🌹🌹🌹
Thank you Neville, I try my best. 🤗 I hope you’re enjoying the lovely weather we’ve been having lately. 🌞😀
Nice one my mate
Hi Katie, that was brilliant! You are a shining star 🌟 🤩 ⭐ Take care, Neville 🌹🌹🌹
Hi Neville, thank you. 🥰👩🏻🦽👩🏻🦽👩🏻🦽
Thank you K 👩🏻🦽😀
Hi again Katie, I'm pleased your appointment was rearranged without too much delay. As with all orthotics sometimes just a small improvement can make a huge difference to the end user. You came away positive which I'm so pleased to hear. If it is more comfortable then that brings great benifits in wearability and day to day use.. From our own experiences the service provided has been from completely inadequate to excellent. I do hope you receive the latter. Best wishes & take care, Neville 🙂 🙃 🙂🌹🌹🌹
Hello Neville, it was great being able to see them quicker than what they thought. I’m hoping it will fit me okay as he didn’t look at my foot properly but I’m sure he knows what he’s doing. 👍🏼 thank you. Let’s hope England bring it home!! 🏴🦁⚽️
@@dinkyktsedsdiaries5018 Let's hope so but not looking to good!⌛
What a wonderful trip down memory lane! It's heartwarming to see the joy and camaraderie during the dazzle walk.
Thank you for your kind words.
Thank you too❤
Hi Katie, what a lovely video! I think you chose the most perfect day of the year to do your walk! It was a great achievement and real team effort! 👏 Take care, Neville 🙂🙃🙂🍀🦓🍀🌹
Hey Neville, aww thank you! We ended up being very lucky with the weather. Thank you for your sponsorship too. Take care 🏴👩🏻🦽🚶🏻♀️🚶🏻♂️☀️
A nice day in the sun.
It was a lovely day especially with the weather. 🤩
Hi Katie, a very informative video on an important day of the year! Based on your figures there may be around 20,000 children annually in the UK alone born with Scoliosis! As you've said before an early diagnosis is important, so that help can be provided. I believe the outcome can be very good if treated from an early age. 😊 Having the best support at home as you have is vital. Overcoming all the hurdles along the way and learning to focus on your abilities rather than disabilities. Having goals and working towards achieving them. 😊 These have made you the inspiration that you are ❤ I know I've become a better person since I have followed your journey,😊 (I wasn't too bad before😂😂) Always room for improvement. I hope today is a good day for you and your family 👪 Take care, Neville 🙂🙃🙂🍀🌹🍀
Hello Neville, I only wish I had more facts and info in the video but I was on a very tight short schedule for this so did the best I could in the time I had. It’s crazy at how many children have Scoliosis, and I agree. Early detection is brilliant especially with the waiting times for clinics nowadays which could mean the curvatures could get worse. Aww thank you: a lot of it with me is that I’ve not known any different and they monitored me closely growing up. Thank you for your support and lovely comment with the info. You and your family take care too. ☺️🦓♥️
does it have table and chairs on decking
No, it didn’t. You could take the dining chairs out onto it though if you wanted to. It was more of a ramp but there was room to sit out on it.
does it have table and chairs on the decking
Hi Katie, Wow, you make such beautiful videos! What is the goal of your UA-cam channel? Are you thinking about future monetization or something like that? Want to create your own brand. A new message for 2024. I visited your UA-cam channel, Your content is just wow but the main reason the video goes viral is video SEO and promotion of your video targeted audience. Your channel has only 162 subscribers and views are very low. Your SEO score is absolutely Low. 9 May 2021 Created your UA-cam channel. But accordingly not getting enough subscriber views like comments. Your video needs to be on-page SEO and Off-page SEO. Then you can see good results day by day And get lots of subscribers and views. ("As your youtube channel SEO partner, I aim to take your UA-cam channel to new heights and achieve lasting success")
It is easy to become isolated Katie. Even with a good support system around you. Talking through issues, sharing the burden. You'll find people will want to help or show where it is available. Being honest with yourself, accepting that you need help and then confiding with someone is the first step to improving mental health. That alone will feel like a great weight has been lifted. Well done Katie. That was quite a challenge. Your a great ambassador for the EDS community. 🦓🦓👏👏 Take care, Neville 🙂🙃🙂🌹🍀🌹
It’s very easy to become isolated especially if you’re struggling mentally. I agree so much. Thank you, I’m proud of doing the challenge but I’m glad it’s over with now. Things will slow back down again now as I recover from it all. 😀🦓👩🏻🦽☀️
That is a very powerful message Katie conveyed with much emotion. You are so kind and generous in holding a hand out to help others in the EDS community. Take care and enjoy May 31st, your birthday and the end of your challenge.🎉🎁 🍾🎂🍾🎁🎉
Thank you so much Neville!! 😀👩🏻🦽🦓🎁🥳☀️😍
Never take anything for granted is something I've believed in for many years. Enjoy the moment and the good people you have around you. And it's very true, the best things in life are free. We all have a lot to be grateful for but sometimes lose sight of it. Take care, Neville 🙂🙃🙂🍀🌹🍀
Very true Neville. Always appreciate every moment whether it’s good or bad but take the bad as a life learning lesson. Thank you 😀☀️🦓
@@dinkyktsedsdiaries5018Thank you Katie 😊😊
Hi Katie, support is everything like you say. You have the very best ❤ Take care, Neville 🙂 🙃 🙂🍀🌹🍀
Hi Neville, it really is so important. Thank you, I’m very lucky. Hope you enjoyed your trip away. 😀🏴♥️
We did Katie whilst the sun shined 😊 Thanks
Hey random internet person. 😊
Hello to you too 😀👍🏼
Aww hugs Katie xx
Thank you John xx
Aww
🥰
Wow 40? I thought you were same age as me x
Ha I’ll be 39 this Friday so still got a year to go before I turn 40 xx
Great song. Walney looks beautiful on a sunny day
We’re so lucky to live where we do John ☀️😍
It must be very frustrating Katie. It can only improve when people like yourself are raising awareness and raising funds for EDS charities to put forward initiatives to the health authorities. Well done for being part of the effort to improve the care to EDS sufferers. Take care and well done for your wonderful effort with the Dazzle Walk. 🙂🙃🙂🍀🌹🦓
Thank you, I'm trying. Id like to do more and somehow get involved with training of medical professionals (at least) to raise awareness and understanding of EDS, and how it affects people. :-D
Well done Katie with your challenge ❤ I hope the Dazzle Walk goes well! The sun is shining! But take care and only do what you can. 5 miles sounds mighty ambitious and I know you will give it your all. Best wishes, Neville 🙂🙃🙂🍀🌹🍀
Thanks so much! 😊 It went really well, thank you. Everyone that joined us along the way enjoyed themselves which is a bonus. It took us one hour fifty minutes to do the 5 miles but that was with a few little breathers as we met with others.
Well done girl keep going ❤❤❤
Aww thank you Tia 🥰♥️
It's no wonder your light is here to share with so many who will take the time to honor the example in peace which you so beautifly exemplify - thank you!
Aww thank you, that’s really very kind of you to say. ☺️
Hi Katie, greetings from Scotland. We're just having a short break. Love the selfie! You look lovely as you always do. You are very photogenic and a natural infront of the camera ❤ Never ever felt at ease myself 😂 😂 Usually hide if I see one 😂 Saturday is fast approaching and I'll be thinking of you on your 'Dazzle' walk. Please weather, stay dry 🤞 Sending my best wishes, take care, Neville 🙂🙃🙂🍀🌹🍀
Hello, and I hope you’re having a great time in Scotland and I hope the weather is good there for you all. Aww thank you, very kind of you to say. ☺️ it took me a long time to get used to being in front of the camera tbh but I always get nervous when other people are taking pictures of me. You’re like my Dad, he hates being in front of it too. Thank you, let’s hope the weather is good for Saturday 🤞🏼 take care. 😀🦓🚶🏻♀️👩🏻🦽♥️
very true
♥️
Well done Katie for catching up on your challenge. I have been watching and learning. Thank you for just being you 😊 Your the best 🥰 Sending best wishes, Neville 🙂🙃🙂🍀🌹🍀
It’s not been easy catching but at least I’m trying, huh?!! 😉 thank you. Aww that’s really nice of you to say. Thank you Neville for always being so kind. 😀☀️🦓♥️
Such a cool idea to use lipstick as your red for vEDS xx
Thank you, it was a last minute resort. I didn’t have a reds 4 VEDS T-shirt and thought the red lipstick would stand out just as much. 💄💋 xx
Might sound silly but have you tried nature? I suffered with depression and anxiety and the only thing that got me feeling normal was going back to nature, being in the green surrounded by trees, wildlife, natural music, beauty beyond belief.
It doesn’t sound silly so thank you for thinking about it. I’m lucky that I live near the beach and some stunning places nearby which are nice to visit. Thank you.
Thank you for sharing your story, wishing you health and happiness in the future. ❤
Thank you so much. ♥️♥️
You should be so proud of yourself Katie. You have to 'climb mountains' to achieve your goals and your right to remind everyone. ❤ I do hope your efforts to see Blue recently were rewarded. 😊 I know it will have taken alot out of you so take care and slowly build back up again 😊 I love the new top 💙 All my best, Neville 🦓🌹🦓
Aw thank you 🤗 it was definitely worth the pain and exhaustion seeing them again 🥰 I will try my best, thank you ♥️
@@dinkyktsedsdiaries5018 So pleased to hear Katie 💙🌹💙
Wow she's 15?! What a loyal companion 😍 xx
I know, I can’t believe she’s 15 either. Definitely been through a lot with her and I’d be lost without her. 😻 xx
It's definitely a lottery when it comes to who you end up dealing with and whether or not you get the help you need xx
That’s very true, some are great and some are not so great… xx
Gosh such powerful words. This was really well put together xx
Thank you lovely ♥️ xx
Hi Katie, i've been watching your videos over the last few days with interest. Marvelled at your ability to put your struggles into poetry. It was very moving ❤ So grateful to your Rheumatology Doctor for being so kind to you ❤ And reassured that you have Pixie to turn to in times of need ❤ "Once a fighter always a fighter" Take care, Neville 🙂🙃🙂🍀🌹🍀
Hi Neville, aww thank you. People have always said that I’m good at writing and it’s something I enjoy doing… expressing myself through words. ☺️ my Rheumy doctor is fantastic when I do see and speak to her although it’s been other ones who have spoken to me recently instead of her and I’m hoping it’ll be her again next time. Pixie is my feisty little fur baby always there for me 😻 you take care too 🥰🦓🤗♥️ ps thank you so much for the sponsorship on my dazzle walk 👩🏻🦽♥️
@@dinkyktsedsdiaries5018 Your welcome Katie. 😊🌹😊
I can relate to this so much 😥 xx
I’m sorry that you can relate to this too, feel free to message me on my page whenever and I’ll reply back asap xxx
Hi Katie, a great achievement for you. We'll done you and the College 👍It must have boosted your confidence no end. Loved the photos 👍🦓🌹🦓
I feel very proud of what I achieved. Especially when I got accepted into two different universities- one for journalism degree, and the other for combined honours degree in criminology, psychology and sociology. Thank you, 🥰🥰🏆🦓👩🏻🦽
Hi Katie, yes I recall you saying that there was a Hydrotherapy Pool at your local hospital and that was lost! I did read there was something similar at Kendal but that is much further to travel. A great shame! Take care and well done with your challenge 👏 Neville 🙂🍀🙂🦓🌹🦓
Hello Neville, yeah it’s a great little pool and it was always very hot. I was referred to the pool at Kendal but they couldn’t meet my needs so had to turn it down. For once a month, it would have been worth the trip 😀 could have a made a day out of it 😆 thank you. Got a Dazzle Walk this month which I can’t wait to do. Take care. 👩🏻🦽🦓😀♥️
@@dinkyktsedsdiaries5018 Oh that was unfortunate regarding the pool but do keep trying incase they could meet your needs at some point in the future. Hope the Dazzle Walk works out well for you Katie, weather etc behaves itself 🤞 Are you being sponsored for it? Count me in if you are! Best regards, Neville 🦓🌹🦓
Being online has really helped me too xx
♥️ xxx
Couldn't live without my heatpad! An essential piece of kit xxx
Mine is one of those that goes under your bed sheet. Can’t live without it! But struggle more when I’m away from home without it. Glad you have a heat pad that helps you xxx
ขอให้คุณหายดี
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You are definitely Zebra Strong personified. I'm glad to be part of your community xx
Aww you are so kind Lou, thank you. I’m thankful for you xx
Stay strong Katie 🦓❤🦓 Those are excellent portraits by the way ❤ Take care, Neville 🦓🌹🦓
Thank you Neville, it makes me happy that you liked what you saw of my portraits. 🥰 🦓👩🏻🦽🐈♥️
Bless you Katie 🙂🙃🙂🌹🍀🌹
🤗🦓♥️
I was diagnosed with hEDS but we think it might actually be aEDS xx
Are you going to see them again to discuss about your suspicions? Trust your gut instinct. xx ♥️
They don't do genetic testing down here on the NHS and I can't afford to go private atm. We'll see in the future xx
Thanks for the information. Stay blessed!
You’re welcome. Thank you and the same to you too! ♥️