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Tag: Stargardt’s Disease

Electrodes from hell

Looking back on photos from last year, I came across some my mum had taken before my diagnosis during an electrophysiology study (EPS) of my eyes. This was to determine what extent my retina had been affected. I remember this day to be long, bordering torturous, although I was extremely lucky to have the most…

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FYI

Advanced Cell Technology (ACT), who late last year were granted FDA approval to conduct clinical trials for embryonic stem cell treatments for Stargardt's patients, has now also been given approval to use embryonic stem cells to treat patients with Dry Age Related Macular Degeneration (AMD).. It seems to be a very similar trial, using the…

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Goggle Vision

As we welcome a new year, we all hope that 2011 will bring a breakthrough for Stargardt's patients! Finger's are crossed! I have been doing a social experiment over the last couple of months. My mum brought home from work goggles from Vision Australia that a person can put on to see what it looks…

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Season’s Greetings!

Merry Christmas and Happy Holidays to everyone! Let's hope 2011 brings us closer to a treatment for Stargardt's Disease!

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Diet – To eat those carrots or to not?

When I was first diagnosed last year, the only thing I was told was to steer clear of any excess Vitamin A in my diet - so no supplements containing Vitamin A. I then asked, "What about foods with Vitamin A?" and my doctor told me that I can't totally exclude foods with Vitamin A…

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Ethics and Embryonic Stem Cells – Opinions??

I've been doing a bit of research on the treatment that Advanced Cell Technology is beginning to trial to treat Stargardt's and came across an anti-cloning and embryonic stem cell research blog. This is put together by Australian doctors and scientists. There is a specific post relating to the ACT trial. The post states that…

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My best friend – my glasses!

I realised today I don't leave the house without my glasses. This surprises me because I hate the way they make me look! This makes me think back to the long process I went through to get my glasses in the first place. At the time of my diagnosis, my opthamologist told me that glasses would…

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Treatment on the horizon

In November 2010, Advanced Stem Cell Technology in Massachusetts was approved to conduct a human study in patent's with Stargardt's!! What fabulous news!! From my research, they will be using embryonic stem cells, which are stem cells from embryos from a fertilized egg in vitro - so these eggs are fertilized in a lab and not…

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For all the Aussies – Inherited Retinal Diseases Study

I've recently become involved with a department as part of Sir Charles Gairdner Hospital in Western Australia and their Inherited Retinal Diseases Register and DNA bank. The aim of this organisation is to be able to study the mutations to the gene that is causing Stargardt's. So I decided I would consider donating my DNA…

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Stem Cell Treatment – Proven or Unproven?

So I came across information about stem cell treatment for Stargardt's currently being performed in Germany. I was over the moon to find this out, very keen to find out more and how I can organise to get this done to restore my sight. I had a look at the company's website - The Xcell…

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