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Tag: fundus flavimaculatus

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too! First up is Jenna! Jenna Lawson, 22, Florida, United States What is your diagnosis and how does it affect you? In…

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Vitamin A and Stargardt’s

The only advice I was given when diagnosed with SD was that vitamin A was causing my vision loss and to not take supplements with Vitamin A. This totally contradicts the widely known fact that Vitamin A is essential for eyes. It's not that this fact is incorrect, it's that it doesn't wholly apply to…

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Second chance for Mr Cane

I have been walking a lot more since unwillingly giving up driving. I have grown in confidence with walking alone but I still find road crossing difficult. I'd given the cane the flick because we just weren't getting along. I haven't used it in some months now although there has been a little voice in the…

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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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It’s the little things

One thing I have come to realise is that the littlest tasks can cause me frustration. As my eyesight has deteriorated I've noticed that tasks I normally wouldn't think about while doing are becoming more difficult. At first I get surprised that I'm having difficulty, then determined to do it, then just plain frustrated. The world really was not created with…

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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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