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Tag: retinitis pigmentosa

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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Spotlight on Retinitis Pigmentosa

What is it? Retinitis Pigmentosa (RP) is the name given to a group of conditions that affect the rods and/or cones of the retina and thus light perception. RP is hereditary and is a degenerative condition. The cells that make up the retina are cones and rods. There are far more rods and these make…

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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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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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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 #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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