My Story

I went through childhood, my teenage years and my early twenties as a fully sighted, full of life girl. I got my driver's licence when I was 17 and after finishing high school went on to study at Sydney University. My vision was perfect, I never had a problem seeing.

In my final year of uni I started noticing troubles with my eyes; I was having problems reading things at a distance, struggled making out objects at night whilst driving, and noticed when I was talking to people I wasn't looking at their eyes, rather at their forehead.

This began the long process of figuring out what was wrong. I went to several optometrists before being referred to an ophthalmologist. I was then referred to a retinal specialist and sent for further tests including an electrophysiology study. I spent the time waiting searching Google for possibilities, coming across what would be my eventual diagnosis and after seeing there was no treatment thinking to myself, 'no I can't have that.'

Six months later I finally received the diagnosis of Stargardt's Disease. I remember the day sitting in the ophthalmologist's office and just feeling numb. I had no idea what this meant, what the future would hold and how it would affect me. I didn't receive very much information at the time of diagnosis, I was simply told to go to a vision impairment organisation and that there isn't anything the doctor could do for me.

Immediately after I was diagnosed I started thinking irrationally about the future, I battled anxiety and depression which still flares up severely as the disease further degenerates and steals more of my vision. I began searching through the internet to find as much information as I could do get my head around the situation.

It was during my search that I can across a German centre offering stem cell treatments to "cure" Stargardt's and other non-related diseases. I contacted the centre and also the Australian Stem Cell organisation to get more information. It turned out it was all a scam and the centre was in the process of being shut down due to numerous complications from their treatments. It was this that led me initially to start this blog. I felt that having studied health sciences and clinical trials I had extra knowledge that not everyone else would have and I could use this to translate research and other medical information into plain English for others to understand and interpret their true value and risks. 

This was the beginning of "See Through My Eyes" in 2010 and has been a place where I can share my experiences, thoughts, emotions and research to others going through a similar experience. More than anything the support received from others has been the most important part of my journey and is what keeps me striving to face my fears and hopefully help others along the way.

I am now studying psychology as a profession I can maintain with my vision loss while also helping others and fulfilling a dream I always had to work in health. Growing up I always wanted to be a doctor, but that dream was taken when I was diagnosed. I always say if there is ever a treatment and my vision is restored, I will go back to uni (again!) and complete a medical degree, even if I'm 80!

I hope you all find this helpful and can relate to my experiences. I hope we can all continue to support one another to build a strong community of empowered vision impaired people!

As I always say, despite having a vision impairment, we can still reach our goals, we may have to take a different path to get there, but we will always succeed. 

Chrissy xo



9 comments:

  1. Hello Chrissy,
    I just wanted to say that, after reading your story, I found that I can really relate to you. I was diagnosed with Stargardt's almost a year ago, and now I am a sophomore in high school. I remember when I got the diagnosis, I first thought off my future life plans and dreams that seemed to be permanently lost. I had always aspired to be a doctor too, but I have had to accept that I cannot do that. I appreciate that you are spreading awareness of this disease, as many people do not know about it at al. I applaud your hard work in school, and I hope that your will continue to do well. People like you inspire me because you have shown that one with Stargardt's can still go on a successful career plan, and goon to live a fulfilling life. I wish you al the best, and thank you.

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  2. Chrissy please google "Ablidy and investorstemcell.com" and follow Robert Lanza of Ocata Therapeutics .....the Clinical trials are staring in Phase II this quarter (MAy or June)

    All the best
    Ablidy

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  4. My son is diagnosed with Stargardt and he is 10 years old. I am very much worried about his future. please suggest careers for these kind of children that he can shine

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  5. My son is diagnosed with Stargardt and he is 10 years old. I am very much worried about his future. please suggest careers for these kind of children that he can shine

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  7. Just found out today my niece and her twin have been diagnosed with Stargardts (just 14 yrs old). We need to know how best to support the family through this.

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  8. Just found out today my niece and her twin have been diagnosed with Stargardts (just 14 yrs old). We need to know how best to support the family through this.

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