Alisha, thank you so much for sharing your story! Long story short, my mom (who is biologically my grandmom, but adopted me and has raised me since I was a baby) has Stargardt's. She was diagnosed in her early thirties, she drover herself to the eye doctor one day and he basically said you cannot drive anymore, you can't even drive yourself home today! I really could go on and on about how the diagnosis affected her life and the life of my dad and six older siblings, how I feel knowing that she has never really "seen" me (I was born about 15 years after the diagnosis), my fears of developing the disease (I am 26 now), etc. but I won't.
Overall she has adapted as much as anyone with Stargardt's can, she sees better peripherally, uses a special magnifying glass to read things, she still functions fine and is able to do many normal things but just in different ways and it takes a bit longer. Now that she is in her early 70s she has spent more years with Stargardt's than without, she doesn't really ever talk about her vision getting worse so I am hopeful that she will not lose all of her sight over time.
My dad recently took her to a trial for some special glasses that could help her vision, I think they were the eSight glasses or something similar. She said it was amazing and she could actually see, the only issue is the glasses are very very expensive she's not sure if it would be worth it. My dad said if she wants them he will find a way to make it happen, and this past Christmas myself and my siblings all considered pooling our money to try and get them for her but the glasses are bulky and somewhat uncomfortable and she said she really doesn't know if she would use them regularly enough for it to be worth it, she said she's become so accustomed to adapting it is just normal for her now.
I guess since this is an AMA I will ask if you have heard of those glasses and if you would ever consider using a product like that?
Again, thank you so much for sharing your story and bringing awareness about Stargardt's to many people who might not otherwise learn about this disease!
aak541 karma
Alisha, thank you so much for sharing your story! Long story short, my mom (who is biologically my grandmom, but adopted me and has raised me since I was a baby) has Stargardt's. She was diagnosed in her early thirties, she drover herself to the eye doctor one day and he basically said you cannot drive anymore, you can't even drive yourself home today! I really could go on and on about how the diagnosis affected her life and the life of my dad and six older siblings, how I feel knowing that she has never really "seen" me (I was born about 15 years after the diagnosis), my fears of developing the disease (I am 26 now), etc. but I won't.
Overall she has adapted as much as anyone with Stargardt's can, she sees better peripherally, uses a special magnifying glass to read things, she still functions fine and is able to do many normal things but just in different ways and it takes a bit longer. Now that she is in her early 70s she has spent more years with Stargardt's than without, she doesn't really ever talk about her vision getting worse so I am hopeful that she will not lose all of her sight over time.
My dad recently took her to a trial for some special glasses that could help her vision, I think they were the eSight glasses or something similar. She said it was amazing and she could actually see, the only issue is the glasses are very very expensive she's not sure if it would be worth it. My dad said if she wants them he will find a way to make it happen, and this past Christmas myself and my siblings all considered pooling our money to try and get them for her but the glasses are bulky and somewhat uncomfortable and she said she really doesn't know if she would use them regularly enough for it to be worth it, she said she's become so accustomed to adapting it is just normal for her now.
I guess since this is an AMA I will ask if you have heard of those glasses and if you would ever consider using a product like that?
Again, thank you so much for sharing your story and bringing awareness about Stargardt's to many people who might not otherwise learn about this disease!
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