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Tag: Experiences

An Experience Participating in a Clinical Trial

There are a variety of clinical trials taking place worldwide specifically for visual conditions such as Retinitis Pigmentosa, Macula Degeneration and Stargardt's Disease. Participating in a trial can be a difficult decision and comes with risks that need to be carefully considered. One such clinical trial taking place on people with Stargardt's Disease in the…

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Shaun Baldacchino

Living with vision loss is no barrier to success. I spoke with Shaun who is a twenty-something year old with Retinitis Pigmentosa who works as an Employee Relations Consultant for the NSW government. Read his journey of navigating high-school and university with low vision and how he hasn't led his circumstances stand in the way…

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We are all unique

A phrase I seem to be continually hearing goes something along the lines of "another person who is legally blind could do it". The most recent time was in reference to attending a residential school for my university course located in another state. I want to get something straight, just because people are classified as…

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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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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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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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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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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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