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I was diagnosed with Usher Syndrome in 2006, I was 12 years old. I had no idea of the complexities or challenges that this condition held for me. Having been born severely...
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Hello everyone, hope you are all doing okay during these unusual times. Some of you may know me and some not, so let me introduce myself. My name is Olivia Morton...
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I was chosen as part of a project run by Molly Watt Trust with the support and collaboration of GN Hearing and Sarah Vokes of Correct hearing in Nottingham. In February...
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Hi folks I hope you are all well and keeping your spirits up. I thought I’d write an update on my experience wearing Linx Quattro hearing aids from Gn Resound for...
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Ok so finally I can write my first Resound One review. On 3 September I was fitted with my new hearing aids. For me it always takes a good few weeks...
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I was so excited about 2020, it was set to be another full year, lots of exciting projects, lots of learning, lots of educating, lots of travel, a new nephew...
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Well folks today so far for me has been a real rollercoaster of emotions. To be honest I’m usually very straight forward and generally a get up and go sort of...
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Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away. Going blind is all consuming so much so we almost lose sight of the real importance of access...
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Well it’s the year of 2020 everyone! It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that...
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This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National...
Read more...We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again: I travelled from Maidenhead to London Euston to catch a train...
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My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year. It...
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Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to...
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Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue...
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Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed. It remains a condition without a cure. There are variations in level of deafness, in level of...
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It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant...
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Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived...
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Today is ‘Rare Disease Day -2019’ So I decided on a blog about hearing aid technology that can and does enhance lives. This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. ...
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I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me. I imagine this must be how natural hearing...
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I wanted to write something for GAAD (Global Accessibility Awareness Day) this year to take into account a lot of the work I have been doing over the last 3...
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When I peer into the mirror I see my right hazel/green eye. Traveling downwards and towards the left I can see my nose then my mouth. Following the nose upwards...
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How is it that a few simple vibrations can give you SO VERY MUCH?If you had asked me the same question just a few months ago I would have probably...
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I haven’t blogged for a while, but feel this heartfelt blog needs to be written. I had never really considered the sadness, even grieving that happens when somebody you have loved...
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Coming to the end of the school year, I have realised how much I rely on my apple watch. The apple watch has given me so much support that has...
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I was aged 14 when I was told I had Ushers Syndrome Type 2. I was devastated and my dreams for the future were gone in a single moment. Being...
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Well it finally came, a date in the diary both Lyn and I had been looking forward to for some time, Amy Winehouse on the 15th of September and 16th...
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On Saturday 16 September 2017, Usher Syndrome Awareness Day, I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris...
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Hi Molly Watt Trust I want to thank you for funding my applewatch. I had so much catching up to do through the school summer holidays including training with my new guide...
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Due to mechanical problems with the aircraft on Sunday 3 September 2017 we have had to re-arrange this fundraiser. New date for this event iis Sunday 26 November 2017 We are...
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I was fortunate to be introduced to local couple Diane and Laurence Armstrong at a Christmas party in 2016. We quickly struck up conversation about both their's and my charity work. Diane...
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When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1. I hoped the watch...
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Why don't people see the potential in different or in disabled? It is absolutely down to awareness, understanding and attitude in my opinion. As a little girl my parents made sure I...
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I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey...
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For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life. I would be lying if I didn't say "REALLY...
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I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome. I regularly receive email from others living with the condition I’m...
Read more...Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK. I'd been lucky enough...
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We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since...
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Unis came into my life when I was 16 years old. Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...
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I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...
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My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...
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I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...
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At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...
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Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...
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San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I...
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I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore. I very unpleasant start to travel...
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13th November, the start of my adventure to the other side of the world. It had been just two days since Mum and I had come off a plane from San...
Read more...My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...
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Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf. What that means, to you, is that I...
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Dynamic text galore! As we all know Apple products, get fairly regular software updates. I had read and heard a few things about iOS 10, but was intending on waiting to experience...
Read more...My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday. We are both have guide dog owners and both love London. I used to...
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I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however...
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My hopeful journey into the Wireless Bluetooth hearing aid world. With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...
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Being an Ushers Mum. In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests. I immediately had an in house...
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After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...
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AppleWatch and smart technology are brilliant for people with Usher Syndrome! I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...
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I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...
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As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...
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My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...
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I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm...
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Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...
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