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Tag: blind

How a person reads with limited central vision

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

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!

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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Update on Stem Cell Treatment

If you haven't already heard, results from the phase I trial using human embryonic stem cells for patients with Stargardt's Disease and Macular Degeneration have been published in the Lancet, and the results are very promising! Nine patients were treated from each disease which involved surgical implantation of the stem cells into the retina of…

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Audible Book Giveaway

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

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.…

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My cane adventures

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…

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The things you don’t get told!

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…

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Update on Current Clinical Trials

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).…

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The Grieving Process

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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