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Tag: inherited retinal disease

Updates on Clinical Trials

There are numerous clinical trials and research projects happening all over the globe for Stargardt's in different scientific and technological fields giving us great hope for the future. Here are the current clinical trials taking place: Drug Trial of ALK-001 Alkeus Pharamceuticals are conducting a phase 2 trial of an oral drug in the United States. A phase 2…

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When to use a mobility aid

A common question that arises amongst people with Stargardt's Disease and other vision impairments is whether I use a cane, a guide dog or neither. The question then  asked is visual acuity, how it helps and why some people use aids and others don't. I've been thinking about this question a lot lately and hope…

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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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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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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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Selling My Independence

This week was a big milestone in my journey of acceptance. I am actually quite surprised that I did it and finally let go of something I had been holding on to so tightly. Probably slightly melodramatic, but I sold my independence this week, my beloved car. I had bought my car brand new almost five years…

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Increased Senses

A common question I get asked is whether since losing my vision my other senses have increased. Generally I would answer no, but lately I've noticed that my senses have been changing and adapting. This is probably due to being more aware of what is happening around me and being more accepting of the need…

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Hope

Living with an incurable, degenerative disease which leads to permanent disablement and blindness is one of the hardest challenges a person can face. Doubled with the fact that the process usually begins in early adulthood when a person has discovered who they are and figured out their life goals and aspirations can make the situation even more…

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