Wednesday, August 6, 2014


Living with an incurable, degenerative disease which leads to permanent disablement and blindness is one of the hardest challenges a person can face. Doubled with the fact that the process usually begins in early adulthood when a person has discovered who they are and figured out their life goals and aspirations can make the situation even more confronting and distressing.

Hope can be a strong and powerful feeling that helps anyone going through this situation, and other situations, get through the day. But is there such thing as 'unhealthy hope'?

My main concern is when hope for a cure dominates everyday thinking and finding a cure is the only way someone can accept their diagnosis or find the will to continue on. 

The one thing for those who have Stargardt's, and any other inherited retinal disease, is that we may be losing our sight, becoming 'disabled' and 'legally blind' but we still have amazing, fulfilling, satisfying and successful lives. Our lives may be different from what we expected them to be, but I guarantee we will look back when we are older and think we wouldn't change a thing.

In saying that it won't be a walk in the park, but in life what ever is? I know myself struggling through another uni degree determined to complete my third degree as a 'legally blind' person and then ultimately completing my PhD will be one of the most satisfying moments in my life. People always ask me how I manage, and to be honest, I don't even know! It is literally pain and tears to get me to where I am and I still have a long way to go. 

I really want everyone to remember that a cure isn't the only answer for us, while it would be fantastic, our lives are still worthwhile and filled with incredible opportunities. 

Always stay positive and remember, no matter what the goal is, you can always get there, you may just have to take a different path to achieve it. 


  1. learned 2 months ago that I have Stargardt disease. I am not legally blind. My visual acuity is 20/25 and I am 29 years old. I think that hope for treatment is the only way to live my life. I don't think I will be able to live my life without my sight. But to read you give me some hope. Keep going with your dreams!

    1. I found out in 2010, when it was still very early in the process. My vision is eroding, but there's a lot of technology out there that can help mitigate a lot of it... and there are a variety of studies that have had very promising results.

      I read somewhere that now is the best time - ever - to have a vision problem, because there have never been as many aids available, and progress has never happened so fast.

      My mom had Stargardt's as well. It started when she was in her mid-to late 20's. She managed to do pretty well, and there weren't nearly as many resources available as there is now.

      I think a "cure" would be pretty awesome, don't get me wrong! But if not, or until then, I'm sure I will adjust... they have some pretty big screens nowadays, and its certainly OK for us to sit close to them... I mean, what can it do, hurt our eyes? =]

      I'm trying to be light, but I also understand some of what you're expressing here... because I've been there myself. If you ever want to talk, send me an email.


    2. Hi Hope for Treatment,
      Stay positive! Honestly, at legally blind I still do so much. Of course I get frustrated but I'm an overachiever and perfectionist so that is probably my problem! It's always hard at the start but it gets easier each day. You can do ANYTHING you want to do don't forget that!