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.
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 👏🦓👏🌹🌹🌹
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!! 🏴🦁⚽️
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 🙂🙃🙂🍀🦓🍀🌹
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. ☺️🦓♥️
Hi Katie, Wow, you make such beautiful videos! What is the goal of your RU-vid 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 RU-vid 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 RU-vid 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 RU-vid 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.🎉🎁 🍾🎂🍾🎁🎉
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 🙂🙃🙂🍀🌹🍀
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.
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!
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. 😀🦓🚶🏻♀️👩🏻🦽♥️
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. 😀☀️🦓♥️
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.
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 🦓🌹🦓
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 👩🏻🦽♥️
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 🦓🌹🦓
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
Dear Katie, I can understand your anxiety before the appt. If you have a splint for your left hand would that do away with the need for the bandaging that you currently have? 🤔 Judging by your appraisal of the other splint which you find comfortable, it bodes well for this one to! What the therapist suggested sound like an excellent idea 💡 I'm hoping it goes well for you. Take care, Neville 🤞🍀🌹
Hello Neville, yeah all of the trauma I’ve been through with this hand definitely made me feel anxious. I’m still a little sceptical about whether the splint will be completely comfortable and supportive. Although I’m remaining as positive as I can, at least she’s willing to try and not give up like they did at WH. I’m really liking the splint on my right hand and the Coban tape. Thank you. 🤞🏼🤗♥️
