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Tag: Stargardt’s Disease

My Fear Vs My Optimism

Over the past few years I have had numerous thoughts that provoke fear and sadness about things in my future. From having my whole life seemingly planned (yes I know I'm slightly OCD) and my goals within my reach to all of it taken from underneath me. I sometimes look back at the day of…

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What’s all the talk about Optogenetics?

In the past couple of months there have been several news articles talking about optogenetics and its use as a treatment for eye conditions including Stargardt's, Retinitis Pigmentosa and Macula Degeneration. I hadn't come across the term so I thought I'd do some research into what exactly it is, since I am known to have…

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Real People #4

Today I'd like to share another story from someone I have been able to become good friends with. Janet is another young lady who I have watched flourish and grow and I am so proud of the positive attitude she has adopted that also helps me stay positive.  Janet Ngan, 24, Phoenix, Arizona, USA When…

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See Through My Eyes on Facebook

If you are on Facebook and don't already follow "see Through My Eyes - Stargardt's Disease", head over and make sure you 'like' the page here. On the page I share up-to-date information on clinical trials and research articles, Stargardt's in the news and other information on services and resources available to people with vision…

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Real People #3

This month's story comes from a fellow Stargardt-er from my city. We live on opposite sides of Sydney and as yet have not met in person, but thanks to social media we have been able to connect and be supports for each other. Mike Lainis, 53, Sydney, Australia When were you diagnosed with Stargardt's and…

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Latest News on Stem Cell Research

I know everybody has been keenly following the Ocata clinical trial using human derived embryonic stem cells to treat both Stargardt's Disease and Age Related Macular Degeneration. Ocata published a  press release on 31 March. Here are the main points: The Phase I/II study has been successfully completed on 38 patients with both conditions. This phase…

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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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Today is a milestone

Today is a milestone in my journey. Apart from being my sister's birthday (Happy Birthday J!), it's also the day my driver's licence expires.  I've held my licence since I was 16 and got my Learner's. My first care was this horrendous red Mercedes Benz station wagon that fit seven people, two backwards in the…

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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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