Blind and Visually Impaired Community
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Stargardts (self.Blind)
submitted by MontrealSD
Hi everyone , I’m new here and glad to see there is a support group
Alittle about my story.... I’m 48 and it’s been a couple years I had noticed some wavy lines in my peripheral view. I was concerned and seen an ophthalmologist.... I had seen an ophthalmologist back when I was 35 and he had mentioned that there was a lot going on in my eyes but if nothing bothered me all was good and followed up every 5 years.
Back to now .... he seen me and said that nothing had really progressed but he introduced me to a colleague of his and she mentioned that the issue could of been genetic and she asked if I was willing to do a test. In the meantime 1 year went by with COVID being around and getting an appointment was close to impossible
November 2020 I started getting really anxious and was dwelling on my eyes being very concerned of what it might be and what it could lead to at this time my anomalies in my eyes got somewhat worse... of coarse I was very anxious and focused on this almost 25 hours of 24 !
I seen my specialist in January 2021 did a bunch of tests and met with her and she said things were stable but I still hadn’t understood what I had ..... I wasn’t convinced yet and was getting still very anxious and even to say depressed and isolating myself from anyone a d thinking the worse and what the future would be and I wouldn’t be able to see my kids and continue doing everything I love.
I have a friend optometrist and he seen my concern and referred me to a pretty renowned ophthalmologist I met with him beginning of March and was able to give me a diagnosis of Stargardts.... with Foveal sparring he tells me I’m very lucky to have reached 48 and he explained to me about this retinal disease.
He mentioned to me that I probably wouldn’t be blind in my lifetime and the progression at this age is slow.
I left his office encouraged but at the same time very shocked. The next day was about accepting this .... it’s very hard and I honestly think it’s gotten worse since then ..... I’m extremely anxious and find it very difficult to do my days I feel helpless and think that my life has come to a stop.
I’m seeing a therapist to help me cope with this but it’s really hard. My central vision is 20/20. It i have blind spots in my peripheral view in both eyes my left more than the right.
I’m constantly worried...... if anyone can give me any advice on how to stay sane or anything I can do to help the condition slow down or just take some advice on how your coping with this it’ll be great help
Good luck to all of us
Thank you
Alittle about my story.... I’m 48 and it’s been a couple years I had noticed some wavy lines in my peripheral view. I was concerned and seen an ophthalmologist.... I had seen an ophthalmologist back when I was 35 and he had mentioned that there was a lot going on in my eyes but if nothing bothered me all was good and followed up every 5 years.
Back to now .... he seen me and said that nothing had really progressed but he introduced me to a colleague of his and she mentioned that the issue could of been genetic and she asked if I was willing to do a test. In the meantime 1 year went by with COVID being around and getting an appointment was close to impossible
November 2020 I started getting really anxious and was dwelling on my eyes being very concerned of what it might be and what it could lead to at this time my anomalies in my eyes got somewhat worse... of coarse I was very anxious and focused on this almost 25 hours of 24 !
I seen my specialist in January 2021 did a bunch of tests and met with her and she said things were stable but I still hadn’t understood what I had ..... I wasn’t convinced yet and was getting still very anxious and even to say depressed and isolating myself from anyone a d thinking the worse and what the future would be and I wouldn’t be able to see my kids and continue doing everything I love.
I have a friend optometrist and he seen my concern and referred me to a pretty renowned ophthalmologist I met with him beginning of March and was able to give me a diagnosis of Stargardts.... with Foveal sparring he tells me I’m very lucky to have reached 48 and he explained to me about this retinal disease.
He mentioned to me that I probably wouldn’t be blind in my lifetime and the progression at this age is slow.
I left his office encouraged but at the same time very shocked. The next day was about accepting this .... it’s very hard and I honestly think it’s gotten worse since then ..... I’m extremely anxious and find it very difficult to do my days I feel helpless and think that my life has come to a stop.
I’m seeing a therapist to help me cope with this but it’s really hard. My central vision is 20/20. It i have blind spots in my peripheral view in both eyes my left more than the right.
I’m constantly worried...... if anyone can give me any advice on how to stay sane or anything I can do to help the condition slow down or just take some advice on how your coping with this it’ll be great help
Good luck to all of us
Thank you
snow671 6 points 2y ago
I have Stargardt's and the number one recommendation I have is therapy to ease your mind. Having someone who can put things into perspective for you and help you work through your fears makes a world of difference.
MontrealSD [OP] 1 points 2y ago
Thank you for the advice
31073 3 points 2y ago
I was diagnosed in my early 20s (I'm 44). I lost my license for a time, but got it back with a bi-optic driving program. I've lived a relatively normal life for over 20 years with the diagnosis. I am scared of driving these days and since covid have only driven 2-3 times a month. I can't really read books anymore which is a disappointment, but there are audio books, and things to read on a computer/tablet. It sounds like you may not run into any of those issues with your progression. What are you afraid of losing? Is there an activity you are worried you won't be able to do anymore? Stargardts is generally slow moving, I doubt you'll ever run into any limitations from it.
sawnny 1 points 2y ago
Hi there, sorry to drag up an old post, but when you say early 20s how long did it take for things to start getting bad? I've just had my first tiny blind spot appear at 23 and im just hoping to get some other peoples experiences :)
31073 2 points 2y ago
I lost my glasses at 22 I think and went to an optometrist who told me he couldn't get me to 20/20 with glasses. That is where my journey started. I lost my license at 29 but was able to get it back with a bioptic driving program. I"m 44 now and still drive, but avoid doing it as much as I can. I have trouble reading anything, but I mostly have a normal life.
If you have any specific questions let me know.
If you have any specific questions let me know.
sawnny 1 points 2y ago
Awesome thank you for the reply :) my only question is from when symptoms first showed, how long did it take until you couldn't read a book without assistance?
31073 2 points 2y ago
I don't honestly know. I only have my own experience so I didn't realize i had a problem until someone told me I did. I've always had trouble reading (even in elementary school), but I'm not sure what can be attributed to Stargardts. I know I read books in my late teens and early twenties. I don't know when I stopped but I miss it.
MontrealSD [OP] 1 points 2y ago
Thank You 🙏 for the reply
projeeper 3 points 2y ago
I was diagnosed at age of 37 became legally blind at 58. I am now 64. The one thing that I have noticed is when I have been In a very stressful situation, my vision would get worse. I’m glad to hear you are getting counseling to help you work through you grief stages so you can get to exceptance then you can start to thrive by learning how to remain independent.
A statement that helped me came from a blind girls blog where her therapist ask her “You have to choose,are you going to be a handicapped sighted person? Or an amazing blind person?” I started googling amazing blind... and was blown away to all the high achievers many that I have become friends with.
There is a lot of resources out there. One YouTuber Sam from “Blindlife” helped me learn lots of tips and tricks early in my journey.
Please know that while we have the same diagnosis, we all experience thing differently. So if someone tells something will happen, it may not be your experience. My friend Storm can’t stand to go without his dark sunglasses (even inside). I can’t stand to wear sunglasses even at the beach. Also make sure your retina specialist knows about Stargardts. Most other vision professionals know very little to nothing about it. Ironically, I was a Licensed Optician for 27 years and never heard of it. Do your research before you choice a retina specialist.
Lastly only you can choose your journey, remember, it’s a marathon, not a sprint. Peace be with you!
A statement that helped me came from a blind girls blog where her therapist ask her “You have to choose,are you going to be a handicapped sighted person? Or an amazing blind person?” I started googling amazing blind... and was blown away to all the high achievers many that I have become friends with.
There is a lot of resources out there. One YouTuber Sam from “Blindlife” helped me learn lots of tips and tricks early in my journey.
Please know that while we have the same diagnosis, we all experience thing differently. So if someone tells something will happen, it may not be your experience. My friend Storm can’t stand to go without his dark sunglasses (even inside). I can’t stand to wear sunglasses even at the beach. Also make sure your retina specialist knows about Stargardts. Most other vision professionals know very little to nothing about it. Ironically, I was a Licensed Optician for 27 years and never heard of it. Do your research before you choice a retina specialist.
Lastly only you can choose your journey, remember, it’s a marathon, not a sprint. Peace be with you!
MontrealSD [OP] 1 points 2y ago
Wow!! Amazing.... thank you for this
vip-sizzles 3 points 2y ago
I am 41 & was officially diagnosed with Stargardts about 5 years ago. However, I became legally blind at age 9 after always having 20/20 vision. From what I've learned over the years is that the disease often manifests during childhood & central vision is affected the most. I would say that I still had usable vision for at least 20 years mostly through my peripheral & magnification was still useful. Although I still have some vision left, I mostly rely on screen readers now. Things you can do to slow the progression is to wear sunglasses outside and limit your Vitamin A intake like carrots. Although Vitamin A is generally beneficial for the eyes, it is my understanding that the defective gene is not able to process excess amounts of Vitamin A leading to cell loss. Similar reasoning with sunlight. Lastly, always have a mindset you still can thrive.
[deleted] 1 points 2y ago
[removed]
meeowth 3 points 2y ago
My mum was diagnosed with stargardts around your age. She is like 70 now, still drives and everything. Always protects her eyes from sunlight, like everyone should.
Thats my only experience with stargardts. Things might go different for you.
Thats my only experience with stargardts. Things might go different for you.
FaerilyRowanwind 2 points 2y ago
On a whole it sounds like your stable. And that’s good. Progression is very slow. And you can help keep it stable by limiting vit A intake and wearing sun glasses. We will support you. Teach out to the blindness community in your area. People really help each other
MontrealSD [OP] 1 points 2y ago
I’m hoping it stays stable ..... thank you for the advice
FaerilyRowanwind 1 points 2y ago
I’m here if you need someone to talk to
[deleted] 2 points 2y ago
[deleted]
MontrealSD [OP] 1 points 2y ago
Thank you for the reply
_-_-Anonymous-_-_ 1 points 2y ago
Listen, I totally understand how hard it is adjusting to a new reality. All you have to do is do your best with these things;
There is a community here to support you if you ever need anything
Blindness isnt bad, its just scary for people who dont know much about it! Once my partner got used to me being independant and patient with myself, it was much less scary for him to think about!
Talk to your therapist openly about these feelings. Know that you arent alone in these feelings. Basically all of the people I know who went blind kater in life described the exact same things! It feels very confusing, like its moving too fast and you feel like you one day will wake up and not know what to do. And i wont lie to you, there may be somedays you feek that way. But you have to try and remember that you are blessed to have had sight with this issue, many people I know lost their vision early on. Im not saying that your struggle is any less thsn theirs, Im saying you should take advantage of the sight you do have, snd explore it! Go to pretty places, take long moments to look at your loved ones, and know that having less vision than before doesnt make you any less worthy of love and acceptance. And you can still achieve any goals you set.
There is a community here to support you if you ever need anything
Blindness isnt bad, its just scary for people who dont know much about it! Once my partner got used to me being independant and patient with myself, it was much less scary for him to think about!
Talk to your therapist openly about these feelings. Know that you arent alone in these feelings. Basically all of the people I know who went blind kater in life described the exact same things! It feels very confusing, like its moving too fast and you feel like you one day will wake up and not know what to do. And i wont lie to you, there may be somedays you feek that way. But you have to try and remember that you are blessed to have had sight with this issue, many people I know lost their vision early on. Im not saying that your struggle is any less thsn theirs, Im saying you should take advantage of the sight you do have, snd explore it! Go to pretty places, take long moments to look at your loved ones, and know that having less vision than before doesnt make you any less worthy of love and acceptance. And you can still achieve any goals you set.
MontrealSD [OP] 2 points 2y ago
Very nice of you to take the time
Thank you very much for these kind words
Thank you very much for these kind words
_-_-Anonymous-_-_ 1 points 2y ago
Np :)
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