Monday, November 22, 2010

Hi All

Hello everyone!

I've begun a blog to help gather all the information around about Stargardt's Disease (aka Fundus Flavimaculatus) and to gather support amongst others who have also been diagnosed with the condition.

A little background about myself: I am 24 years old, living in Sydney Australia, and was diagnosed with Stargardt's at the end of 2009 (awesome Christmas present!). It was suspected that I had had the condition for some years, yet it went undiagnosed. It came as a great shock to me, especially since my mum and I had spent weeks googling possible conditions that I may have after it wasn't an easy "prescribe some glasses and you'll be right" case. We had come across Stargardt's in our research but instantly dismissed it, probably due to the fact it had no treatment and we didn't want to think of it as a possibility. But after many tests, dilated pupils and several electrodes being placed in my eyes, a conclusion was finally drawn. I was then sent on my way to deal with it and pray for someone somewhere to do something about it as nobody else could.

I am to find out as much information as possible about research, treatments and support, and would love to hear everybody else's stories.


  1. Hi,

    My name is Mike, and I'm 28 and live in Calgary, Canada. I was diagnosed with Stargardt's Disease when I was 6 years old, so I have lived with low vision for most of my life. That being said, I think since I haven't known any other way, it has helped me cope with adapting to life with low vision - I live a normal life and do everything I want like snowboarding, golfing, hockey etc.
    I came across your blog because I have Google Alerts set up to send me an e mail any time the keyword "Stargardt's" appears in any news article or blog. I've been following all the developments on possible breakthroughs in treatment in the area of stem cells and gene therapy for a number of years now, and it's getting pretty exciting.
    When I was diagnosed, my mom told me that the doctor said that there would never be a way to cure this disease in her wildest dreams. She basically said that I am stuck with it and should just learn to live with it. It's starting to look like that doctor could be proved wrong, but we will see what happens in the upcoming years.
    Anyway, I just thought I would respond to one of your posts to support you, and let you know that i will follow your blog now. I'd love to hear more from you, so if you like, you can e mail me.

    All the best,

  2. Hi Mike!!
    It's great to hear from you! And thank you for your support!
    I'm also looking forward to proving that doctor you first saw wrong! I think with the advances in medicine today it is inevitable that someone somewhere will eventually find something to treat or even halt the progression of our disease!
    Thanks for sharing your experience!

  3. Hi, I am debs, I am a mother of Florence who is now 10 , she lost her most of her sight at 8 , now they are saying it could be safeguards. stargardts have end-users all the tests you have spoken of. We have started gene tests this week. If my other daughter does not have the mutant gene. There may be hope . However previous tests show her retina to be reading quite low too. Let's try and keep in touch