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Category: Chrissys Blog

A Guide Dog Experience

Last week I had an assessment for a Guide Dog. I have been using the cane for some time now (you would know Mr Cane and I have had a rocky relationship if you've been following my blog for a while) and have been considering a Guide Dog for my mobility. Mobility aids are a…

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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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Spotlight on Stargart’s Disease

What is it? Stargardt’s Disease, also known as fundus flavimaculatus, is an inherited retinal disease. It is similar to macular degeneration in its presentation although affects much younger people, with onset usually in children, teens and young adults. Stargardt’s affects the macular which is located in the retina of the eye. The retina is responsible…

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Reconnecting with Creativity

Being creative is something that my life has encompassed since I was a child. I started dancing when I was three years old and kept it up for over twenty years. I did drama and singing, drama I didn’t like so much but I loved to sing. During primary school I learnt to play the…

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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 #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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