My ex husband has Stargardt, it's a rare disease and I've always wondered how many people have it. I was concerned my children might get it since it's hereditary but they are 7 and 9 and no signs of it yet! I enjoy seeing someone with it embrace it instead of trying to hide it 💓My ex was very self conscious of it and only close family and I knew for a very long time.
+Danon Reid Thanks for sharing. I hope your children don’t carry the recessive gene it’s s hard life to lead but not impossible to enjoy. Wishing you and your family well
I love this! I have stargardts too! It has always been a part of my life. I was diagnosed at age 8 but I don’t remember much of the time before. I was legally blind by age 9. I’ve always found that it may be more difficult but no one has it perfect and easy all the time. My favorite quote comes from the movie Soul Surfer. Her dad is showing her a line of surf boards starting with biggest moving to the smallest regular board. He says “we just need to get you from this to this” as he points at the boards. “It won’t be easy” he points out. Bethany, who is relearning how to live with only one arm says, “I don’t need easy. I just need possible.” That is my life motto. You’re great! We can do all things! PS apple products are amazing!
+Jordan Wilson Work thanks so much for it that quote. It’s so true we just need positive. Life is hard for everyone and there’s no contest. There’s also no denying that it’s harder for us but we can do it. We will ride above our limitations and do incredible things with our lives. Thanks again for being so positive.
I was recently diagnosed with Stargardts as well and I'm grateful for you and others who share their thoughts and experiences online because i was completely clueless when I was diagnosed. Yes I read all about it on google but I wanted to know how are people LIVING with it personally and that is what you are sharing. It is a bit different for me since I've been near sighted and wearing glasses since I was a young child so when my vision got worse I just kept thinking I needed new glasses. And even my optimologist wouldn't understand why I couldn't find the right prescription and still had trouble seeeing. Finally I got a retinal scan and got sent to 2 retinal specialist before I was diagnosed. Still to this day I get the comment "can you see?! You need to get your glasses checked!" And it's just easier to agree than to go through the whole story and answer all the questions. I am 29 and still have a pretty good vision so I seem to have a slower progression than most. This makes it so my mother is in complete denial that my vision will never get worse. I am a nurse so the thought of my career path is always disheartening. Anyways I am just glad to have found your page. Thank you so much for sharing
+Tina Dales Thanks for sharing as well. Let's hope your vision stays stable and you can continue being a nurse and doing the things you love. It can be quite annoying to have to change your live as the disease progresses so ok crossing my fingers you never have to experience that I too thought I only needed glasses at 19 and at 21 I was DESPERATELY searching for positive people to share their experiences. I only saw medical websites and negative ass people in chat rooms at the time. It was quite depressing. So here I am today trying to change that and I appreciate you sharing your story with me because it makes me feel like the loneliness I felt doesn't have to be a part of the Stargardt's experience. xx
Hey I just ran into your channel because I wanted to look into my disease more. Your Channel rocks. Keep up the good vibes. I feel you a bunch on so many different topics.
Inspiring video Alisha!! I struggle with my vision as well, but just like you I didn't let it keep me down. I've learned to adapt and embrace my situation. I refuse to let it stop me from living my life😁!!!
What a great video. You are a beautiful woman inside and outside. Struggles are our best way to learn and develop. Keep shining and never give up. May you always be blessed in every single way you take😉
hey i just stumbled uppon this awesome video and its the closest thing ive gotten to a chat with someone besides me legaly blind since where i live there is nobody else like us and thus there is no help for me, thanks for the cheer up :)
+UnderPaidPotato no prob! That's what I'm here for. It can be isolating living life legally blind with no one to relate to so I'm happy you found this and I hope our little community here makes you feel at home 🙂
This started off kinda poetic. I got excited, thought for a second you were about to lean into it for a light spoken word piece. Good video I liked this style. I’ll never understand you “two thumbs” texters. Just like using chopsticks I look ridiculous trying.
This is so True I'm legally blind in the struggle is real I can't even leave the house alone because I could really get hurt in yes the super market is a struggle but i kno every awl now in the elevator so true I never push the right button but I no I have to have patience thank you for this video
+Broken hearted girl Reacts yes!!!! This eye condition literally forces us to have patience looool. What a funny situation we are in. Stay awesome and you'll be alright girl!
I see like you :) maybe I'm little more low vision. I am from Poland :) I support people with Stargardt in Poland! ;) I am on the bright side of low vision ;)
Jeez your a strong women; I have some newly diagnosed vision loss from afar 10ft out or so an I cant seem to find the strength to over come it. How do you build the confidence on a daily basis? Sometimes I dont even like going outside.
It's not easy, it comes with challenging yourself on top of the challenges sometimes you have to push yourself when yo don't want to sometimes you have to be ok with your self not wanting to and just be ok with that
Alisha's Guide I heard about how I can use a hard contact in order to get more vision and then get glasses to make my eyesight as great as possible. It's sucks how I'm only 14 and am the one saving up for this stuff though
I will not be completely blind from this disease but it has already deteriorated to half of what it was when I made this video so there's potential for my macular to continue degenerating, yes.
My ex husband has Stargardt, it's a rare disease and I've always wondered how many people have it. I was concerned my children might get it since it's hereditary but they are 7 and 9 and no signs of it yet! I enjoy seeing someone with it embrace it instead of trying to hide it 💓My ex was very self conscious of it and only close family and I knew for a very long time.
+Danon Reid Thanks for sharing. I hope your children don’t carry the recessive gene it’s s hard life to lead but not impossible to enjoy. Wishing you and your family well
I've also learned living with Stargardt disease. Thanks for sharing! It was really comforting.
So proud of you! Always Love your perspective on life & all things!!! Love you babe x
I love this! I have stargardts too! It has always been a part of my life. I was diagnosed at age 8 but I don’t remember much of the time before. I was legally blind by age 9. I’ve always found that it may be more difficult but no one has it perfect and easy all the time. My favorite quote comes from the movie Soul Surfer. Her dad is showing her a line of surf boards starting with biggest moving to the smallest regular board. He says “we just need to get you from this to this” as he points at the boards. “It won’t be easy” he points out. Bethany, who is relearning how to live with only one arm says, “I don’t need easy. I just need possible.” That is my life motto. You’re great! We can do all things!
PS apple products are amazing!
+Jordan Wilson Work thanks so much for it that quote. It’s so true we just need positive. Life is hard for everyone and there’s no contest. There’s also no denying that it’s harder for us but we can do it. We will ride above our limitations and do incredible things with our lives. Thanks again for being so positive.
Very inspiring and a reminder not to take things for granted. Wishing you all the blessings possible.
+Fabafter5 thank youuuuu💛
I was recently diagnosed with Stargardts as well and I'm grateful for you and others who share their thoughts and experiences online because i was completely clueless when I was diagnosed. Yes I read all about it on google but I wanted to know how are people LIVING with it personally and that is what you are sharing. It is a bit different for me since I've been near sighted and wearing glasses since I was a young child so when my vision got worse I just kept thinking I needed new glasses. And even my optimologist wouldn't understand why I couldn't find the right prescription and still had trouble seeeing. Finally I got a retinal scan and got sent to 2 retinal specialist before I was diagnosed. Still to this day I get the comment "can you see?! You need to get your glasses checked!" And it's just easier to agree than to go through the whole story and answer all the questions. I am 29 and still have a pretty good vision so I seem to have a slower progression than most. This makes it so my mother is in complete denial that my vision will never get worse. I am a nurse so the thought of my career path is always disheartening. Anyways I am just glad to have found your page. Thank you so much for sharing
+Tina Dales Thanks for sharing as well. Let's hope your vision stays stable and you can continue being a nurse and doing the things you love. It can be quite annoying to have to change your live as the disease progresses so ok crossing my fingers you never have to experience that
I too thought I only needed glasses at 19 and at 21 I was DESPERATELY searching for positive people to share their experiences. I only saw medical websites and negative ass people in chat rooms at the time. It was quite depressing.
So here I am today trying to change that and I appreciate you sharing your story with me because it makes me feel like the loneliness I felt doesn't have to be a part of the Stargardt's experience. xx
Hey I just ran into your channel because I wanted to look into my disease more. Your Channel rocks. Keep up the good vibes. I feel you a bunch on so many different topics.
+Connor Kane thank you so much!
Inspiring video Alisha!! I struggle with my vision as well, but just like you I didn't let it keep me down.
I've learned to adapt and embrace my situation. I refuse to let it stop me from living my life😁!!!
+Johnnel Adderley (johnnylemondrops) YASSSSS girl we must be strong! I love your spirit
Wow! Very well explained! I share with you Stargardt chanllenge. Thank you for explaining to all how it is like to live with it. Great video! 👏👏
Hey Sam thanks for sharing that you're going through it too. I hope that you're finding joy regardless of how the disease is affecting you
What a great video. You are a beautiful woman inside and outside. Struggles are our best way to learn and develop. Keep shining and never give up. May you always be blessed in every single way you take😉
+Noelia Fernández thank you I totally believe your point about learning and developing through adversity xx
This is a great video! Very well done
+Heather Fontez Thanks Heva!
Hey Cuz. I am really late watching this!! lol. Not on RUclips often. Keep strong & keep fighting! Super proud of you!
tY
Thanks so much for sharing! I had never heard of Stargardts before you shared it us on your channeling. I love your channel btw 😊. Awesome videos!
+Brittany Purdie thanks 💕 I never heard of it before I was diagnosed either lol. Now I feel like it's my mission to spread the word!!
wow. fantastic video. I really admire your spirit.
+Nadine Smith thank you girl!
hey i just stumbled uppon this awesome video and its the closest thing ive gotten to a chat with someone besides me legaly blind since where i live there is nobody else like us and thus there is no help for me, thanks for the cheer up :)
+UnderPaidPotato no prob! That's what I'm here for. It can be isolating living life legally blind with no one to relate to so I'm happy you found this and I hope our little community here makes you feel at home 🙂
Beautifully inspiring!! 😙
+Kat Messam 💛💙💚
Wow - enlightening, thank you for sharing!
+warrick9289 glad you enjoyed
This started off kinda poetic. I got excited, thought for a second you were about to lean into it for a light spoken word piece. Good video I liked this style. I’ll never understand you “two thumbs” texters. Just like using chopsticks I look ridiculous trying.
Thank you. 🙏🏾🙂
Beautiful video!
Thanks 🌸
This is so True I'm legally blind in the struggle is real I can't even leave the house alone because I could really get hurt in yes the super market is a struggle but i kno every awl now in the elevator so true I never push the right button but I no I have to have patience thank you for this video
+Broken hearted girl Reacts yes!!!! This eye condition literally forces us to have patience looool. What a funny situation we are in. Stay awesome and you'll be alright girl!
Amazing video :)
+Liz Hope thanks Liz ☻☻☻☻☻☻☻☻☻
I LOVE it!
+Jasmine G Parker Thanks 💚
Love this video. I could totally relate.
+Naili Saleh 🙂
I see like you :) maybe I'm little more low vision. I am from Poland :) I support people with Stargardt in Poland! ;) I am on the bright side of low vision ;)
Jeez your a strong women; I have some newly diagnosed vision loss from afar 10ft out or so an I cant seem to find the strength to over come it. How do you build the confidence on a daily basis? Sometimes I dont even like going outside.
It's not easy, it comes with challenging yourself on top of the challenges sometimes you have to push yourself when yo don't want to sometimes you have to be ok with your self not wanting to and just be ok with that
Someone told me there are some ATM's that have headphone jacks so you can hear what you're doing has anyone else experienced this
They have them in Canada so hopefully they have them soon where you live
I have -19 -19 vision at the moment. If I get worse I plan on getting the glasses needed and contacts under those as well.
+Domo :P Hopefully those work for ya. I haven't. Even able to use either in over 5 years
Alisha's Guide I heard about how I can use a hard contact in order to get more vision and then get glasses to make my eyesight as great as possible. It's sucks how I'm only 14 and am the one saving up for this stuff though
good video. what is the red mug thing called that you put the coffee in?
+seygra20 hey hey thanks it's called a 1 cup espresso maker/percolator
***** cool
Thanks for sharing!!!!!
+blessed 😊 thanks
Amazing
+Dahlia Barrett thanks so much Danielle Bring sunshine rom ANU
This is the worst of Stargardts right? Like it can't progress any further and you won't go totally blind right? :( I hope not.
I will not be completely blind from this disease but it has already deteriorated to half of what it was when I made this video so there's potential for my macular to continue degenerating, yes.