I can't imagine being diagnose after you've established so much of your life! I feel for you. It will take a bit of adjusting, and there will be frustrating moments. My advice is to learn your limits, and ask for help before you get to the point of frustration. Accept that some things won't go perfectly, and some things aren't worth the strain of trying. You'll get there!
Hello fellow Stargadien! Great to see that you are doing so well! Many greetings from Germany. I got diagnosed this year at the age of 29. and it terrified me. Your vid. and attitude gives me strenght!
I'm so glad I could help ease the fears! I know it's a lot to adjust to, and I'm sure harder when diagnosed at a later age! Let me know if you ever have questions on my experience. I had some more progression of the Stargardts around your age and it was hard to take. But we humans are strong and can adapt! Plus technology is only getting better!
I’ve been living with Stargardt‘s disease for over 20 years now. Thank you so much for sharing your story. It is always helpful to hear how other people are dealing with their vision loss. I am wondering if you use any mobility aids like a white cane or a guide dog? Also curious what life is like being a mom with Stargardt‘s disease?
Hi Katie! I don't use a cane or guide dog since I'm able to see enough to navigate walking in public. I live near a suburban downtown where half the crosswalks have speaking timers, so that is really helpful, and otherwise I watch the cars and people around me to help guide me across streets. I do use my phone to take pictures of signs and whatnot so I can zoom in. Hopefully I find time to do a video on life as a mom! But in the interim, there are challenges but I've adapted as they/ve grown. I've realized how aware I am of my surroundings and what my kids are doing at all times by a subconscious active listening. Another challenge is if I'm at the park without my husband, I need to keep the kids together as I can't see them across the playground. So I just always keep them close. Then I've learned to use a small CCTV to read them books! It's in the way of pictures a bit, but they've gotten used to it. I'm not shy about explaining to them that I can't see as well as they do and my daughter loves helping me when I ask! Hopefully more to come in a video...
Hi! I do not drive anymore. My vision was just above the legal limit after the first dip, but once it took a second dip around 30 years old, I'm now past the legal limit. Luckily the ride share apps make things easier for us to get rides, and we hire a mommy's helper to drive me and the kids to school and back each day.
@@rsc9913 When I did it, the process was to get a form filled out by a low-vision specialist (to measure your acuity more precisely and with the bioptic) and then take it to the DMV for the drive test. I recommend going to a DMV near an elderly community because they'll be more familiar with the process.
Thank you for this! I recently got diagnosed I'm 49 ... have to say that this really came as a shock and still struggling to understand it
I can't imagine being diagnose after you've established so much of your life! I feel for you. It will take a bit of adjusting, and there will be frustrating moments. My advice is to learn your limits, and ask for help before you get to the point of frustration. Accept that some things won't go perfectly, and some things aren't worth the strain of trying. You'll get there!
Hello fellow Stargadien! Great to see that you are doing so well! Many greetings from Germany. I got diagnosed this year at the age of 29. and it terrified me. Your vid. and attitude gives me strenght!
I'm so glad I could help ease the fears! I know it's a lot to adjust to, and I'm sure harder when diagnosed at a later age! Let me know if you ever have questions on my experience. I had some more progression of the Stargardts around your age and it was hard to take. But we humans are strong and can adapt! Plus technology is only getting better!
I- how you so friggin excellent ^3^
I’ve been living with Stargardt‘s disease for over 20 years now. Thank you so much for sharing your story. It is always helpful to hear how other people are dealing with their vision loss. I am wondering if you use any mobility aids like a white cane or a guide dog? Also curious what life is like being a mom with Stargardt‘s disease?
Hi Katie! I don't use a cane or guide dog since I'm able to see enough to navigate walking in public. I live near a suburban downtown where half the crosswalks have speaking timers, so that is really helpful, and otherwise I watch the cars and people around me to help guide me across streets. I do use my phone to take pictures of signs and whatnot so I can zoom in. Hopefully I find time to do a video on life as a mom! But in the interim, there are challenges but I've adapted as they/ve grown. I've realized how aware I am of my surroundings and what my kids are doing at all times by a subconscious active listening. Another challenge is if I'm at the park without my husband, I need to keep the kids together as I can't see them across the playground. So I just always keep them close. Then I've learned to use a small CCTV to read them books! It's in the way of pictures a bit, but they've gotten used to it. I'm not shy about explaining to them that I can't see as well as they do and my daughter loves helping me when I ask! Hopefully more to come in a video...
do you still drive?
Hi! I do not drive anymore. My vision was just above the legal limit after the first dip, but once it took a second dip around 30 years old, I'm now past the legal limit. Luckily the ride share apps make things easier for us to get rides, and we hire a mommy's helper to drive me and the kids to school and back each day.
@@katrinao73 i’m 18 right now and got the biopic telescopes i’m excited to drive but I feel the process is taking so long any suggestions
@@rsc9913 When I did it, the process was to get a form filled out by a low-vision specialist (to measure your acuity more precisely and with the bioptic) and then take it to the DMV for the drive test. I recommend going to a DMV near an elderly community because they'll be more familiar with the process.