Disabled Blogger Tag

This Q&A tag is a wonderful creation by Elin at My Blurred World who recognised that, in amongst all of the many blogger tags out there, disabled bloggers didn’t have a tag for themselves. I’m one of the people she nominated to do it, and I’ve also been nominated by The Invisible Vision Project, Amanda Gene and Life Of A Blind Girl, so thank you to all of you! 🙂

So here are my answers, as a post and a video. I hope you enjoy it and find it interesting!

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My First Aniridia Network Conference

One of the first people I met after moving to London last year was James, a trustee at the Aniridia Network. He got in touch after he saw me writing about aniridia on my blog, and noticed that we had other things in common too. So we met up and became friends, which was a great welcome to London in my early days here.

Over the months since then, I’ve became a voluntary communications officer for the charity, which involves helping out with blog posts, social media content and email newsletters, as and when time permits. One of the first things we did together was to edit the promo video for the first Aniridia Day last year, which was very successful.

And now the latest project has been recording and publishing material relating to the Aniridia Network Conference, which took place on 14 April. It’s their flagship annual event, bringing together people with aniridia, parents of children with the condition, medical professionals, researchers, etc, for a day of presentations, activities, socialising and information gathering.

And this was my first time at the conference, so I was really looking forward to it. Not only would I be helping out with filming, but I was also asked to give a speech there as well, so it looked set to be a very busy day!

So in this post I want to tell you how it went. And this is just my own personal perspective, this isn’t part of my social media work for the charity. They are of course welcome to quote from this post, but they haven’t asked or sponsored me to write this. You can see their own updates about the event, including photos, videos and feedback, on their websiteFacebookTwitter and Youtube pages, with much more to share over the coming days and weeks. But for now, here’s my own experience of the day.

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Growing Up With Sight Loss

When I started my blog and Youtube channel, I assumed that the only talking I’d be doing for people about my disability was purely from the comfort of my own home, reaching people through their computers and smart devices. But then, last year, I ended up giving my first ever public talk to adults at the Nystagmus Network Open Day, about building my new social network. It was a complete surprise and a completely new experience for me, and one that I assumed was going to be a one-off.

However, earlier this month I had the opportunity to give another talk, this time for a very different audience – primary school children, around 9 to 11 years old.  I won’t name the school or the people involved – they’re awesome and know who they are anyway – but what I want to do here is give you an overview of what I said. I wanted to take the time to write it down for posterity anyway, as I went over it in my head beforehand rather than writing a script.

So I figured you might find it interesting to read as well (or watch my video if you prefer), as it gives another perspective on my journey through life to date.

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Rare Disease Day Photo Challenge

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! 🙂

Happy Rare Disease Day! 🙂

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.

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Q&A – My Aniridia & Nystagmus

A few of my recent posts about my visual impairment have become very popular, which has been wonderful of course. In large part this is because the RNIB have very kindly shared them, which has enabled them to reach a huge audience.

The posts in question are Room 101 – My Visually Impaired Frustrations (which is also on the RNIB Connect website in edited form), my How I See video (which has had an overwhelming response on their Facebook page) and my Nystagmus Tag (which has had quite a few shares since RNIB’s retweet. Thank you to everyone who has liked, shared and commented on all of that, it’s very much appreciated.

As a result of those posts, various people have got in touch with questions relating to my conditions. I’ve answered them all either privately or in the comments area they were posted in. But I thought I’d summarise the questions and my responses here as well, in case others find it useful.

Thank you to Sam, Charlotte and Nadine for the questions in this post, I’m happy to help as best I can. And if any of you reading this want to ask me anything about my visual impairment, or anything else for that matter, then feel free to comment here or on my Twitter or Facebook feeds. I’m happy to do more Q&A posts like this if people wish.

So here are the questions and answers. I hope you find it interesting and useful. I’ve also made a video of my responses as well.

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Nystagmus Tag

Today, November 1st 2017, is Nystagmus Awareness Day (aka Wobbly Wednesday), set up by the Nystagmus Network here in the UK. Nystagmus is a condition where the eyes shake and move involuntarily all the time, which makes it harder to focus and concentrate on things. It can come as part of the package with other eye conditions or on its own, and it has different levels of severity in different people. So it’s a very varied condition. For a detailed explanation of how it affects me personally, check out my Living With Nystagmus post and video.

To mark the day, I’ve been tagged to answer some questions on nystagmus by Youtuber Jessica King (Jessylrk) – thank you Jessica! And if you have nystagmus too, then I tag you to do this as well. So here are my answers to the questions, and I hope you find them interesting. You can also watch a video of my responses as well.

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How I See (RNIB #HowISee Campaign)

One of the common misconceptions about those of us with visual impairments is that we have no sight at all. It’s as if some people think eyesight is on or off, like flicking a light switch. I’ve had people assume this about me in the past, and have even had people telling others that I’m blind, because they don’t know how to explain it properly.

But the fact is that 93% of people who are registered partially sighted or blind can see something. Every single visually impaired person sees the world in their own unique way, some better than others. It’s a huge spectrum. So don’t assume that a visually impaired person cannot see at all, because 93% of the time you’ll be wrong.

The RNIB are spreading awareness of this simple fact using their #HowISee campaign. They have been asking people to make short videos about how they see, and this is my contribution. It’s had a big reaction on Twitter and Facebook already, so please do feel free to share it and help spread the message.

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