Update (March 1st) – I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂
Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.
1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.
There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.
This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.
Happy New Year everybody! I hope you all had a lovely Christmas, and that 2018 is a joyful and prosperous year for you. 🙂
This Christmas marked my first anniversary of moving to London. It’s hard to believe it’s been that long already. And 2017 has been an amazing year! Although I was already used to getting around the city from my previous visits, it was still a leap into the unknown in many respects to actually live here. I had no idea how well it would work out, how safe or comfortable I would feel, how accessible events and attractions would be, and how easy it would be to make friends.
But it’s been more than worth the effort, and I’m extremely happy with how well it’s gone, given all the friends I’ve made, places I’ve explored, new things I’ve tried, and the opportunities I’ve taken up. A year ago I never imagined that I would be doing many of the things that have transpired in the months since.
I’m also pleased that my blog, Youtube, Instagram, Facebook and Twitter pages have had a steady increase in followers over the year. Sure, I don’t have big numbers compared to the bigger bloggers out there, but relative to where I was a year ago it’s been a substantial leap. And my goals for this haven’t been about the numbers anyway. Making connections, sharing my experiences and spreading a bit of awareness was always my aim, and I’ve been achieving that. It’s resulted in numerous opportunities and new experiences, including guest posts, a public speech (with another planned for next year), participating in a research study (which is continuing next year), being interviewed by a journalist, and more. My efforts have been paying off more than I could ever have imagined, and I’m loving it.
But above all, thank you so much to everyone I’ve met and interacted with during the year, whether it be in person or online. By reading, liking and sharing my content, leaving comments, asking questions, sending me private messages and emails, giving me opportunities for guest posts and public talks, and even meeting up in person, you’ve helped to make this year a very special one for me. Especially Aniridia Network UK, Nystagmus Network, London Vision, Thinking Bob, VocalEyes, RNIB, Scope, Fashioneyesta, Life Of A Blind Girl, My Blurred World, Luke Sam Sowden & All The Stations, but also everyone else that I’ve had any kind of contact with during the year.
Everyone has been very positive and supportive, and your involvement has enabled me to start this new chapter in my life with confidence and comfort, and fun and friendship. And for that I’ll always be very grateful. 2017 will forever be one of the most significant and happy of my life, nothing will take that away.
And I’ve had a lovely Christmas to finish it off in style, so I wanted to bring you up to date with how it went and the various things I enjoyed. This is quite an epic post as a result, and I’ve also filmed a video that mentions some of the stuff here along with my general reflections on 2017 as a whole. So I hope you enjoy!
Having not been to a pantomime for quite a long time, and with plenty of them taking place across London, it’s been fun to attend a couple of them during my first proper Christmas as a resident of the city. Especially as both shows had audio description as well.
So I figured I’d combine my reviews of them into one post, and I hope you enjoy reading about them!
Hello again, welcome to my latest Favourites roundup. Once again it’s a varied package, with some disability blog posts and events, a museum tour, no less than three musicals, another outing with Fashioneyesta, my first trip to a Lush store, the delights of the Lord Mayor’s Show, and more. So I hope you enjoy looking through it al!
Hey there, welcome back for another big update on what I’ve been getting up to. As usual it’s been a very busy month, as I’ve enjoyed an audio described exhibition and theatre show, a couple of fun tours, events involving lots of chocolate, my first ever afternoon tea, a guest appearance in a special Youtube project on a football field, a craft show in a beautiful setting, a classic scary movie at the cinema, and more. So I hope you find this compilation interesting as usual!
Hello again, nice to have you back for my next roundup. It’s been my most significant and eventful month of the year so far, with my first ever public speech, a holiday overseas, a walking tour and a meal with a fellow blogger, audio described tours of an art exhibition and a few special buildings, a day trip to another town, and a music and drama workshop. So I hope you enjoy!
I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles or a social media promotion, hello and welcome! 🙂
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On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.
So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!
Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.
So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.
Hi there, welcome to my next update! My birthday month has been marked by a number of special outings, including my first meeting with one of my favourite Youtubers, my first audio description experiences at a theatre and a cinema, my first visits to a few places outside London, a park outing with a visually impaired social group, a music pub quiz, some talking statues, and a couple of other walks too. So yet again there’s a lot to cover here, with lots of photos and video footage accompanying it, and I hope you enjoy!
Hello again, hope you’re doing well! This has been another busy and very enjoyable month, most significantly including my first experiences of audio described museum tours, along with more social events, festivals and some other nice walks. So I hope you enjoy this latest roundup!
Hi there, welcome back to the next instalment of my monthly updates. It’s hard to believe that it was the 6-month anniversary of my move to London in June, that’s certainly flown by!
But for me, I’ve happily continued with my explorations of London, taking advantage of the glorious weather to walk around a lot of different places, capturing lots of photos and videos along the way, as well as celebrating Aniridia Day, seeing TV shows being recorded and socialising with friends! Hence this is a very busy post, and I hope you enjoy it all!
Well Eye Never 
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