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Tag: inherited retinal disease

Online Support Groups

I know I have been very slack with my blog and it's time I made up for it! I have been very busy having a love hate relationship with my cane, giving up driving and leaving my job. You could say I'm having a mid life crisis (at 27).  Something I have been meaning to…

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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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DNA Testing

Today I finally got the courage to go an get all the blood sucked out of me. Well it felt like all of it. When it comes to needles I generally swing two ways - either I'm the bravest person you'll ever meet and it doesn't phase me, or I'm the biggest baby. Today I was a…

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Australian Inherited Retinal Diseases Register

I have previously posted about the Australian Inherited Retinal Diseases Register based in Sir Charles Gardiner Hospital in WA. I plead with anybody who hasn't yet registered to give them a call so that we can get a better idea of how many Aussies are affected. I spoke to the Research Assistant, Ling, who kindly…

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More hope!

Another clinical trial is being conducted in Rome, Italy, directly relating to Stargardt's!! This is very exciting news! The study centres around Saffron (a spice) as it is thought to be a "retinal neuro protectant against oxidative damage" (see link below). The study plans to give saffron supplements to participants to study its effects. This…

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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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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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