Friday, October 3, 2008


One of the first things you learn when you live with Stargardt's Disease is how to adapt. As a child growing up, I quickly learned how to act normal. Part of it was because I didn't want to have to explain my condition to everyone I meet.

Often I hear people ask, how can you survive. Well the answer is quite simple, you survive because you have to, you adapt to you "weaknesses" and find ways around the problem For example, I usually can't see signs or people, and so when I go into a restaurant I pay extra attention on "landmarking" my location so if I go to the washroom I can backtrack by myself.

I can't really see the music score for the piano but I am one level away from the teacher's certification for piano. My mom told me what notes and from me listenning to the piece ahead of time I know how the rhythm goes and piece it together bit by bit and memorizing all the music.

Much of the adaptaions rely on paying extra close attention to "details" and memorizing the information and use thatas my "eyes".

But there are also adaptaions that I do solely for the appearance of being "normal" living in everyday society. For example, when at restaurants Ioften I am unable to read the menu but I still open and stare as if I was reading. Or when I am at a fast food place I still stare ateh lighted menu as if I am reading wha'ts on the sheet. If I go to a business meeting I still stare at the screen or a piece of paper even when its too small to read for me.

There will be plenty of things you have to adapt to when you ahve Stargardt's, but the moral of the story is that even if you are visually impaired, you can still do things like everyone else, with a little adaptation and modification, you can appear like a normal sighted person.


  1. Jen, thank you for starting this blog. This will help the lives of thousands! Do you have contact information where you can be reached?

  2. Hey Jen,
    My aunt has Stargardt's disease and she is 57. She is a very successful independent woman. However, she is very very stubborn. She refuses to ask for help or anything. She has not been to the eye doctor since she was diagnosed in her 20's. I am sure technology has advanced and they can make better glasses for her. (hers are still glass and very heavy) I would love to ask you some questions about some different things! I was thrilled to find your blog!!! :) Thanks.


  3. Wanted to share my encouragement for this blog as well. There's lots of clinical information out there, but little that helps those affected and their families. I am enjoying the posts so far, and will be interested to learn more in upcoming posts.

  4. Thanks to all that support this blog. It is a true pleasure sharing some of my experiences with living with Stargardt's.

    Sid: Feel Free to write me @ and your support is much appreciated.

  5. Maureen:
    I can understand why your aunt is stubborn. Sometimes, in order to keep that drive of living "normally", you need a certain stubborness in not giving up. Its not easy. As for technology, there are many improvements its true, but at the same time, most of these are not able to directly improve the retina. What I've noticd is there is an incredible advancement in the aids that can help make your life easier: GPS, magnifying glass, CCTV, monoculars, the list keeps going. So perhaps instead of focusing so much on "fixing the problem" which is not a valid solution, it would be much better to consider getting aids to help with doing everyday things.

  6. Glenn:

    Thanks for your support and hope to hear more from you!

  7. Hi Jen,

    Wow, I am so happy that I came across your blog! I am a 26 year old male living in Calgary AB and was diagnosed with Stargardt’s when I was about 6 or 7 years old.

    I’ve never met or even talked with anyone who has Stargardt’s before, so this is extremely exciting and interesting to me. I read most of your posts and can’t believe the similarities in our methods of coping with low vision through childhood and now in adult life. Everything you described such as landmarking where you’re sitting in a restraint, staring at a fast food menu when you order even though you know you can’t read it, and always pretending to be “normal” are all exactly what I do.

    I’m excited to hear more about you and be able to share some things in my life living with Stargardt’s with you. Is your blog the best way to communicate with you?


  8. Hi Jen!

    I wanted to let you know how much just reading your blog has helped me. Personally I do not have Stargardt's disease, but my boyfriend does. It has been such a had thing for me to understand. You see I met him when I was only 14, and we have been dating ever since (im 19 now). When he first told me he could probably never drive, and he has a hard time seeing things... I never thought much of it. I only saw him for who he was, and not that he had a disability. But as time went on...and we got became so challenging. Especially now, when we are just getting to the point where we want to further our relationship. I get so frustrated sometimes when i have to take him to work and pick him up all the time. And things such as that are becoming increasingly hard for me. The whole problem is: Im young, and im afraid of what im getting myself into. (Does any one know from personal experience the challenges we would face?)

    Words cannot even describe how much I love him and how much chemistry we have. And it hurts when I get so happy about the future we are planning together, and then suddenly I have to think: Is he ever going to be able to drive? How difficult it would be if we were to get married or to have children? I have done so much research on this disease and if there is any hope of a cure. I think I will always have hope for that. But there is so much I still dont know.

    Is there any advice you can give me being on the other side of it? Or is there any kind of treatments or aids that could possibly allow you to drive? Besides being a bioptic driver (thats no legal in florida)?



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