How a person reads with limited central vision
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March 15, 2015
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By Chrissy Renee
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7 comments
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I had a thought whilst lying in bed wide awake. I want others to get a sense of what it's like to live with Stargardt's. It's really hard to explain what it is like to lose something that you take for granted and use every second of the day. Then I thought to a chain email that circulated…
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Real People #2
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March 05, 2015
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By Chrissy Renee
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1 comment
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'Real People' - Stories of Vision Loss, Chrissys Blog, Experiences
This month's story comes from a good friend of mine who has been a great support to me from my early days of diagnosis. I hope he can inspire you too. Jono Goerlach, 32, Canberra, Australia Tell us a bit about your condition and your symptoms. At age 15 I was diagnosed with Usher Syndrome…
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Happy Rare Disease Day!
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February 28, 2015
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By Chrissy Renee
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2 comments
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Today is Rare Disease Day to raise awareness about rare diseases and the impact these diseases have on people's lives. It is an international day held annually. Stargardt's Disease is considered a rare disease, with the incidence widely debated. Here are some statistics I can dig up about SD: SD affects about 1 in 10 000, so in…
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Audible Book Giveaway
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July 25, 2014
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By Chrissy Renee
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2 comments
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I'm very excited to share that Audible has given free audio books to give away to five readers. For those of you that haven't tried Audible, it has thousands of audio books, current and past, and you can access them on your phone or tablet through their easy to use app. I have been using…
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The Finger Reader
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July 16, 2014
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By Chrissy Renee
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3 comments
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Now this is one invention I am super excited about. Since I came across a news article about it a few weeks ago, I've been thinking of all the ways I could use it and how beneficial it would be to the vision impaired. The FingerReader is a prototype developed by MIT and is a ring which reads printed text.…
Read MoreMy cane adventures
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February 07, 2014
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By Chrissy Renee
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6 comments
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I've had a cane for over a year now but haven't been brave enough to use it. My vision is further deteriorating and I decided it was time to accept the cane. I have an amazing mobility instructor from Guide Dogs who has been helping me learn how to get around using the cane. A…
Read MoreThe things you don’t get told!
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January 18, 2014
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By Chrissy Renee
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8 comments
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Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've…
Read MoreUpdate on Current Clinical Trials
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November 22, 2013
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By Chrissy Renee
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7 comments
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It is an exciting time in medicine and especially for Stargardt's sufferers and others with inherited retinal diseases. Here is a summary of current trials: Phase I/IIa study of StarGen (Gene Therapy) This study is being conducted by Oxford Biomedica at two sites, Oregon Health and Science University (US) and Institut de la Vision (France).…
Read MoreThe Grieving Process
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November 17, 2013
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By Chrissy Renee
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5 comments
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Usually when we think about grief we only think about the loss of a loved one. We can also experience extreme grief in other situations, including the one we face after being diagnosed with a vision impairment which will ultimately send us legally blind. In fact, we are really grieving the loss of our vision,…
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