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Tag: macular degeneration

Day 1 of Guide Dog Training

What. A. Day. I don't think I've had a day where I have experienced so many emotions in such a short period of time. I'll start at the beginning. I had a sleepless night; I was anxious about the day ahead. I couldn't really put my finger on why my belly was churning and my chest…

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Living With a Degenerative Condition

Stargardt’s Disease, along with other retinal diseases and general ocular diseases, is a degenerative condition. This means that the condition continually worsens. Usually the condition is caught in the early stages, and sometimes preventative measures can be taken to slow progress, but in the case of Stagrardt’s and other retinal diseases, there is nothing you…

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6 Things Not to Say to a Person with Vision Loss

It is hard enough to cope at times with having a vision impairment, and sometimes comments can really get to you. I know (most) people mean well, but when you get asked the same questions regularly which really have no good answer or are just plain silly, it starts to eat away at you. I…

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Real People #3

This month's story comes from a fellow Stargardt-er from my city. We live on opposite sides of Sydney and as yet have not met in person, but thanks to social media we have been able to connect and be supports for each other. Mike Lainis, 53, Sydney, Australia When were you diagnosed with Stargardt's and…

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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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Update on Stem Cell Treatment

If you haven't already heard, results from the phase I trial using human embryonic stem cells for patients with Stargardt's Disease and Macular Degeneration have been published in the Lancet, and the results are very promising! Nine patients were treated from each disease which involved surgical implantation of the stem cells into the retina of…

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The things you don’t get told!

Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've…

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Sore Eyes

I have been having problems recently with constant sore eyes and migraines. It's really starting to get on my nerves because I can't be outside in the sun or even in bright rooms. The only thing that seems to work is to lay down in the dark and close my eyes, which is very unproductive.…

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The London Project

I have been told by several people to check out 'The London Project' as they are making strong progress in finding treatment for blindness. The organisation aims to cure blindness through stem cells, and with what I have learnt to date about Stargardt's, this seems to be the future in our treatment. Their main focus…

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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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