5 Tips for Stargardt's Disease Everyone Should Know | Life, Legally Blind ◌ alishainc
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- Опубліковано 21 лип 2024
- Giving you 5 tips for living iwht Stargardt's Disease. In the 7 years that I've been diagnosed and adaptng to my eye disease I've leared a thing or two that I wish I knew sooner that I want to share with you! Beling legally blind isn't easy but hopefully you can apply these hacks, tips and tricks to your daily life to not only help you adjust but also to slow down the progression of Stargardt Subscribe for two new videos a week! bit.ly/1PdQ95Z ツ
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TIPS MENTIONED
🔳 Wear Sunglasses
🔳 Avoid Foods high in Vitamin A
🔳 Stress Less
🔳 Sleep More
🔳 Plan Ahead
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Related Links▹
How I Edit My Videos bit.ly/1WVpoWG
My Eye Disease, Stargardt's bit.ly/Stargartds
Life, Through My Eyes bit.ly/seelikeme
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Music: I Miss You Instrumental ∘ Grey ft Behari (UA-cam)
FTC: None ◌ The Motto: always keep it 💯
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Alisha's Guide
This channel was created to share a passion for style, hair care and lifestyle related videos. Created, filmed and edited by a legally blind person, this guide is proof that you can overcome limitations.
Thanks for watching
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#alisha #lifelegallyblind #stargardtsdisease
Loved this video!...I was diagnosed at 17 (I am now 74)...my DH and I raised 4 wonderful sons, none have Stargardt’s, although 3 Re color blind...not related condition. I did not know about carrots, etc...love all of those things, but will avoid them heretofore. It is so satisfying to hear that it is real that some days I see better than others...thought it was allergies, although some days it is...thank goodness, I have always slept well.i have been a audio book reader for 40 years, and the service of BARD is so awesome, and to be able to get books on my phone is beyond wonderful!..the think that I do consistently is use tactile sensory..I crochet, and quilt...ironic that someone who has been legally blind for so long has a passion for things that mostly require sight!...sorry, so long winded...thank you for this,...UA-cam has introduced me to other people with Stg...I have never met any event else with it,...my siblings do not have it.....
Lol it usually turns out that way. The things we can’t do or we are told are not possible because our vision lost are in fact possible and enjoyable to us. Glad you’re still living your best life and finding happiness regardless of your diagnoses.
Hoy, 6 de marzo, en todo el mundo conmemoramos el "Día Internacional de la Enfermedad de Stardardt".
El Stargardt produde discapacidad y son muchos los niños y jóvenes con Stargardt que pierden mucho de su escolaridad y de su inclusión social.
Hagamos difusión, que se escuche nuestra voz, que se conozca la enfermedad, que los pacientes accedan a sus diagnósticos, que la ciencia nos estudie, que los laboratorios desarrollen tratamientos, que los gobiernos apoyen la investigación.
¡Hagamos que se cumplan nuestros derechos!
¡Feliz 6 de marzo, Día Internacional del Stargardt!
Florencia Braga Menéndez (whatsapp +54 911 2266 3101 EPOFArgentina@gmail.com)
Today, March 6, around the world we commemorate the "International Day of of Stardardt Disease".
The Stargardt produces disability and many children and young people with Stargardt lose a lot of their schooling and their social inclusion.
Let's spread Stargardt, let's do awareness, let's our voice be heard, let's the disease be known, let's patients access their diagnoses, that science study us, that laboratories develop treatments, that governments support research.
Let's make our rights fulfilled!
Happy March 6, International Stargardt Day!
Florencia Braga Menéndez (whatsapp +54 911 2266 3101 EPOFArgentina@gmail.com
I’ve recently been diagnosed and came upon this channel tonight in doing research on foods that can help. This is a great find and I can’t wait to go through all your videos that I’ve missed. Thank you!!
My partner has stargardts disease, thanks so much for this 💙💙💙
Hi! Thank you very much for producing this video. Even though I have retinitis pigmentosa, this list you gave is still very interesting and informative. I can relate with a lot of the things that you said in this video. Thanks again for another amazing and informative video, I look forward to watching more! Matt
This was a great video! I have had Stargardts disease for 6 years now and I understand the struggle.
Thank you :) it’s so true that stress causes it to get worse it’s kind of hard though because for me my eye strain causes me to constantly feel exhausted and stressed out and I wish there was a way to fix that. Still a really helpful video and I’m glad you made it! I immediately subscribed because it’s mice to heat someone else who knows the struggles of it
Thank you. This is the best Stargardt’s video out there!
You are so upbeat and cheerful. Props to you. I’ve been struggling with this disease for the past twenty years and have reached the end of my rope with it. Going to church each week to pray for healing now. Going to start a UA-cam vlog on it. Hoping for results. God bless!
Hey Ben!
Thanks for sharing it takes a lot of strength to be honest about where you’re at Aand Share it so take a mo’ to give yourself credit for that!
I’m glad you found my channel hope to keep giving you uplifting content to cheer you up 🙂 stay strong I know who tricky it can be
Thanks Alisha! My son was diagnosed whith Stargardt’s disease about 2 years ago! He was only 8... and we freaked out! But seeing a girl like you, talking so openly, and living you own life... gives us hope that he will be able to live his too... we are from Brazil, and I’ll keep watching your videos...
Hey Aline sending love to you and your son in Brazil! TFS. I’m sure it’ll be a brave boy who will grow up into a man that amazes those he meets by being resisitent and happy in spite of his disease. 🙂
:) ~ you're quite inspiring! My beautiful son has Stargardts, he's 16 yrs old and seems to be adjusting to the disease.... I, on the other hand stress terribly. I follow you and thank you for being so informative.
I just discovered your Channel and I'm in love with your content I was diagnosed 2 years ago and it has not been easy especially at work people are so in sense rive, I'm from South Africa ❤️❤️❤️
omg thank you!!!!! Yeas it's not easy I'm glad you're still managing sending love to you in SA 💞
Wow this was really helpful. I was just diagnosed today with Stargardt's. You are so right about stress. My eyesight got waaay worse when my cat died. It was the first pet I ever had so of course I was upset. I cried soo hard. The next day when I woke up I could barely see anything. I thought I broke something but I found out that I always had issues with my eyes but stress made it worse. It has been a long journey but today I finally got answers. Thanks for making this video. I will make sure I follow your advice.
Oh no, sorry to hear about your Pat and your diagnosis. Both are hard in someway, I'm glad that you have an understanding of why your vision was worsening. I have a friend who's never been diagnosed with anything but is legally blind. So, it's good to have an idea of what you're dealing with so you know you're not alone. Stay strong
I got diagnosed with Stardgarts in 2012. Im still learning new things about the disease now. No one ever advised me to own a pair of sunglasses besides the transotion lenses in my glasses. I think i like the sunglasses tip lol. Stay strong.
As someone with vision I realise how ignorant I am about your needs but pleased to be informed! Thanks for your sharing.
+Louise Winter your comment means a lot to me. I didn't know about the world of blind until it became part of my life so know how somethings can be overlooked (pun intended lol) with standard vision. It means a lot that you want to become knowledgeable 💓
This is so helpful! I was diagnosed in Nov 2016 and honestly it'd freak me out because some days the vision was better and some days it was worse and I didn't know why or if it was normal... I do stress often and I think it might be the reason why!! Glad to hear about these so early on :)
TFS. Glad you found this video hope your vision stabilizes
Welcome to the club. Its important to share one's experience. Keep it up with new videos
Thanks for your support!!
Its amazing how positiv and String you are 👍🏼👍🏼 i have stargardt Desease too
I’m trying I’m trying. Thank you. Hope you’re doing well 💛
Great video!! I also have stargardt's! I was diagnosed two years ago. Thanks for the tips, i will definitely have too look into my vitamin a consumption!
+Grace Jarrott Yes please do! Two years in is a perfect time to limit your intake!!! So happy you found my video
im so glad you made this video:) I knew most of this from doctors but I'm glad I found a video addressing it for people who haven't been informed about things like vitamin a etc. me and my brother both have stargardts and we are both in school, which is difficult and stressful enough not to mention our sight issues.
+rachael.jpg yes, had to make this video for that exact reason. Wow you two are really determined so amazing that you're both in school amidst the challenge
Alisha's Guide yeah. it hasbt progressed much. the place i go duke eye center wss running trials for tratment
I was diagnosed with Stargardt 16 yrs ago and totally relate . Thank you for sharing your tips it really is nice to find someone who also has Stargardt there are not too many people that I have found that have this disease and understand it as well . So Thank You
you're so welcome! There are tons of us, so many people have commented and we have a little community of people who relate so know you're never alone and never hesitant to reach out when you feel like things get heavy, stay blessed
@@alishainc Thank you again I just wanted to ask you if you would not mind me using some or your tips and ideas ? I also am a Visual Rehab Instructor I teach Independent LIving Courses and these tips you share are so helpful to all people with vision impairment .
I am a visual artist and was diagnosed with SD 10 years ago. Just this year I started using a white cane. It was more a bust to my ego than anything, but it helps others know that I am not ignoring them if they wave or if I don't recognize them in the stores. It tells people ahead of time, so I don''t have to. Thanks for your videos!
Thanks so much for sharing how it's been for you I'd imagine if and when I need one I'll feel that way too
Thanks for the great video
I was diagnosed 23 years ago with stg disease. very helpful information
+Jason Staley Happy I could help!
Great vid! I was tentatively given this diagnosis today at The National Eye Institute pending genetic testing. I'm 37 and my vision is between 20/60 and 20/8p corrected right now. I am nearsighted and have astigmatism too. I am the only one in my family and the only one I know with this which can be a bit isolating. Helpful to know there are others out there. Have you been to a low vision specialist? I saw one in Feb and his reccomendations and advice have been invaluable.
Hope your vision stabilized. Yes I’ve been to seven specialists in the the first year of diagnoses
Thanks, I'm writing a children's story and one of my characters has Stargardt's disease :)
+Sea Shell That’s so cool!!! Send me it when you’re done and I’ll buy a copy and promote on my channel
Sea Shell me too please send me if you’re down ..my children have a Stargardt’s but they don’t know about it yet ..thanks
Hey if you need illustrations from a fellow stargardts person I'm a major in drawing and painting
Sea Shell oh interesting
Your videos are amazing and I hope you have a good life
Hi, informative video.
Like you I am a very stubborn person when it comes to blind people gadget such as the king & braille. I was diagnosed with Stargards 34 yrs ago I still haven’t learned to live with it. Looking forward to watching more of your videos.
thanks for sharing! I'm so glad I'm not the only one not "used to it". This life is a trip but all we can do is the best we can! Stay blessed amigo
This video has really helped! You are absolutely beautiful & I enjoyed your energy! My son is 21 and was diagnosed at 16 with Stargardt Disease. He’s in college and progressing well. I stress excessively- well, because I’m his mom, and I just can’t fix this. His DETERMINATION is AMAZING & I’m beyond proud. I wish I could change the outcome- I would exchange my peepers for his without hesitation. In the meantime, I will be his biggest supporter! PLEASE DO A FOLLOW UP ON YOUR PROGRESSION OR THINGS YOU’VE LEARNED, ENCOUNTERED, or DISCOVERED 5 years later. I would also like to know if you drive or use any type of glasses for reading and/or driving. 💞
awww thanks so much! Appreciate it and wow good on your son for excelling! It isn't easy.. yes I think mums are supposed to worry my mum alwasy does LOL
sending love and blessings to you
I do feel you Alisha! There is so much negative disability stigma surrounding white canes and guide dogs. I don't want to be labeled and pitied by strangers as weak with these tools. I also feel that I should learn Braille now while my vision is ok, but am scared. I agree that these aids are old school and can't wait for new and better technology to come out. Thanks for sharing your videos and their awesome message!❤️
+Nikki Farahanchi I’m so happy you understand! So ppl think I’m being critical of the guide dog/cane. I’m not I only want the technology to catch up to the needs of the blind community. It’s not wrong to want for for the visually impaired community. And one day we will have devices and gadgets to help us in our daily tasks as substitutes or complements to dogs and canes 🙂
Very helpful and totally agree about brail and white cane but my guide dog has given me soo much freedom xxx great video
Happy to hear your GD helps you. Thanks so much for sharing and commenting. It's great for the community to know that others are out here being independant in their own ways.
You are so awesome! I'm so glad I saw this video!
+Lilly A thanks love
A doctor from Switzerland told my brother who has SGD to avoid vitamin A and here this wonderful woman saying the same I better tell my brother ASAP thanks for your time and effort sweetheart
no prob! I don't know why more doctors are not letting their patients with Stargardt's know
I was diagnosed about 3 years ago now. downside for me is I also have glaucoma. I'm with you in the resistance to learn Braille. I have actually bought a book to start learning but I always find myself putting it off. good tips!
+Amanda Smith Yeah it's so hard with the transitioning part but good luck on your journey! You've made it this far I'm sure you'll continue to adapt gracefully
Wow I'm grateful for this help as I have this disease
Hey there, cool video I didnt learn anything from it personally however i think its great to see somebody making an informative video about what is quite a rare disease, especially for people who are recently diagnosed and still a little unsure. Also my opthomologist recommended foods rich in Lutein could be helpful (generally yellow foods like pineapple, yellow peppers ect)
+turnski thanks for your honesty, I hope the next one has some goodies in it for you. Lutein is a nutrient that is good for all eyes and is food in high conc in foods like tomatoes too. (I studied nutrition and food science in uni) so I didn't want to mention the nutrients good for everyone's eyes but rather focus on the deleterious vitamin A that propel with Stargardt's might think is good for their eyes but is actually prove to progress the disease. I will probably do a complete nutrition video for eye healthy next month. Stay tuned.
I was diagnosed in February 2018 and i am 13 years old! the video helped a lot thanks
Glad I could help out!
I love this. I use my memory a lot to compensate. My favorite food is sweet potatoes so that sucks! I’m glad I’m not the only one that’s stubborn and wants to be as independent as possible! I’m 22 and was diagnosed 4 years ago
Nope! You're not the only one, and memory is key
Great video thank you for sharing my biggest problem is finding a job that I can actually do and make an honest good living and support my family that I can work out with my eye condition it's very frustrating because there's so much reading involved with every job title and typically driving is another big thing obviously having to get there and home
It’s great that you have support of your family! Hope it helps to ease your frustrations
I have the same thing and didn't know any this stuff thank u so much
Hi! Thanks for the video! I was diagnosed last week!! But I just thought I needed glasses..but now I am on to super protetion sun glasses etc and taking it easy. I am usually a stressed person..so will need to do something.
hey love sorry fro the late reply, sorry to hear you've bee diagnosed too. Glad you're taking it serious and easy as well it's very important that you put your physical and mental health at the top of your list now. Best of luck
1st let me start by saying .. great informative video ...last week I was taking my usual morning walk and bam outa nowhere the world became pretty much black..then after tests I was diagnosed with adult onset stargandits.. I'm 39 years old .north Dakota
.now followed by constant migraines and for 1st time hulisinated last Saturday. That was also scary
Also having extreme memory loss ...doc is flying me out too Minneapolis on july 30th for gene testing and clinical trials ...just trying too find out all information on this since it's still all new too me ..I cant work atm cuz this so I applied for. disability..not sure how much a month we get for blindness but ...better than nothing..just looking for people I can talk too that are going threw what i am ..hope ur day is good ..back too my music now : ))
From Morocco and I was diagnosed 16 years ago, good thing I can still see with my peripheral vision yet SURE MY EYESIGHT does not get any better with the massive exposure and use of phones and computer but hey your short clip will really help for the long run
That’s so cool you’re from Morris I.! Yeah some people have said it’s not good to statin our eyes with tech
being organizedis a must for people like us so go around those stressful moments of trying to find out where you put things ( as an American citizen do you receive any help. support or even a little hand from employees wise or government wise? and what kind of job opportunities are for you? your videos are such a fresh breeze in my heart @
Damm I have the same disease but I didn't know anything about vitamin a
+Kelsey J22 I feel like doctors and opthlamologists should be telling their patients!!! It's so important
Right there with ya! That's a lot of my favorite foods in that list :(
thx
All my favorite fruits and veggies are orange... the doctors told me not to eat vitamin a foods but not really whyyy. It makes gunk in your eyeballs?! Ew!
Vitamin D is also one you don't want to be getting to much of
Very very accurate, if I’m stressed or don’t sleep well my eyes are always worse the next day.
Its't it crazy, you can go to bed and literally wake up the next day with less vision. Its just crazy
I was diagnosed at 10 with almost perfect vision now I'm beyond 20[600 At the age of 34. There's no getting around having to use sighted guide my white cane or guide dog yet this point. Oh my kids are awesome in a guide dog is easier than again trust me. I'm so glad I found your video as nobody ever told me that I should be limiting my vitamin a intake. No one ever. And I've seen doctors in Europe and all over Washington State. I just wonder if the build-up that causes the disease affecting my vision has anything to do with how I more and more sensitive to the Sun on my skin. I feel like I'm burning or itching. Going to do my research and try to find doctors that no more.. Just hoping my vision stabilizes finally as it's been a lot worse this last 3 months in my personal vision is like walking through hog all the time . Good luck and thanks for sharing your story.
Hi Raymond I hope your vision stabilizes too. I am sorry that no one told you before about Vitamin A but at least you know now. All the best.
Good morning thanks for your video. I just discovered this video this morning. So thank you. I wanted to let you first know that I may be getting a caregiver who has star guards disease. She is someone who I met during the pandemic who is a person who likes to help people anyway. So she may end up being my caregiver which would be great. Unfortunately, I don’t have very good mobility skills. I have been having issues with orientation and mobility since I was little. I am blind myself. So the fact that she can do cited guide with me is excellent. She has her peripherals, but no more central. And she seems to be doing really well with it, so this is very good news for me. Let me explain quickly why I need a personal care assistant/caregiver. By like one of your other commenters was discriminated by the school system. Both at schools for the blind and public schools. School for the blind people could not understand why I had so many issues with cane, travel, and BRAILLE. The public school, never had a blind student before, so I didn’t know how to help me. Everyone thought that I could be super independent. I had an aid a classroom aide who is really nice. These idiot teachers thought she was doing too much so they had her removed Instead, she was replaced by a hard nose disciplinarian who turned me into a rebel. I did not want to put up with her crap, so I would always rebel against her. She was very very strict about Kane traveling no cited guide. So I’d have to do a lot of secret cited God when she wasn’t around. If she knew have to stuff I did I bet you, she would probably have high blood pressure and have a lot of anger spells that would probably cause her to be removed from a lot of society. Ha ha. If he was an angry with me, she was angry at someone else, but would always take her anger out on me. No students wanted to be around me when she was my age everyone thought that I was her pet so, I had pretty much no one to help me. So I had to pretend like I was good at mobility, even though I was terrible at it. Are you say to guide a lot with my family even to this day I still do. They’re getting older, so that’s why I’m trying to figure out how I can still be safe when they’re outings. Which was nice because the block of time that we had was called leisure. We could play a game in their game room we could go to the ice cream parlor or we could go to lunch. It was just a time for a sighted person to be a mentor to a blind person get the blind person out and not teach but enjoy the time. I was originally in a work program, but I dropped out of the work program because we were getting subminimum wage so I decided to drop out of that program and just go to the Other program the leisure portion. Nobody was impressed by that decision, but I didn’t care. Anyway, the other program I went to was unfortunate. They required people to wear sleep shades, and they really force non-visual skills. Which I’m totally blind that wouldn’t matter, but it really angered me that people with some degree of vision had to have their vision taken away. It’s like taking away a basic right of yours. To use your vision so I refuse to go to those programs. Plus, they weren’t very nice to me about the mobility they were like teasing me and saying why is your mobility not good but anyway, all of these things are why I’m going to be receiving a personal care assistant, and that person was also right when they said that rehab is kind of useless the department for the blind or whatever they called it. That to me just shows you that they don’t care. You have a right to an education and you have a right to blame this training but you don’t necessarily have a right to choose what you want. You have to do what you’re told. Which doesn’t really teach blind people much about freedom and independence in my opinion. So this is why I’m going to personal care assistant route. I’ll have more freedom with them than I would in a training center. I don’t read braille either and I don’t think braille or mobility or I should say white cane mobility is that important if you don’t have vision, I don’t think BRAILLE is important. If you don’t have vision even if you have vision, you don’t want to learn it it’s not that big of a deal to me. I don’t read brown I haven’t read it since 2006 and I’m doing just fine. Also, one more thing about the guide dog person. I will never get a guy dog in my life. The problem is is when people have guy dogs. The other people all they care about is the dog. How’s that beautiful Labrador doing. How’s that beautiful Chihuahua doing. They care more about the dogs and about you. So that’s not do it. Anyway, please forgive any of the typing mistakes I have to dictate since I don’t read braille myself. As long as you use a Magnifier, or any other low vision aid, you should be good. And remember, if you’re using your vision and your determined not to learn, braille or mobility, that’s good, because you are determined to keep that vision. Which I think is also good you’re telling your body that I am not going to go blind that I’m going to see no matter what. So you’re being positive and that using your vision will help that positivity to keep it maybe. Anyway, I’m going to send this and I hope that it’s readable. Thank you from Alex.
oh wow Alex, thanks for sharing. I hope that you are managing the best you can and keep your head up. I hope you can get the caregiver you desire that will help a lot. I agree you're right it doesn't teach visually impaired people about independence.
Greetings from Brazil! Thanks for the tips! 🤘🏻🤘🏻
+Marcel Costa hiiiiiiii. Omg Brazil that's so cool 😍😍😍😍 thanks for watching
Finally someone I may be able to relate to! Where have you been? I am going to try to get the text of the comment section so my phone can read it to me, but in the meantime, may I ask a couple questions you have probably already answered? How old are you? When did you find out? How bad is it? Heard of e sight? Thoughts? SCOTS stem cell trials in florida? Thoughts?
Hey!
I’m 29 I found out when I was 21 because I thought I just needed glasses at 19. I have 20/300 in my worst eye. I’ve tried edging. Don’t like it but it might work for you. Yes heard of stem cell
Best of luck sister👍👍
This is a very good video and I agree with everything that you hare saying. I have had SD for 20+ years now and I am not using a cane or anything like that either. Stubborn to the max. Will's eye hospital is doing stem cell research. Hopefully I will have my implantation soon.
+Clarence McCray II cool. Good luck with the research! Yeah the cane doesn't work for me so there's no point but I'm happy that it helps people out there who lack peripheral. Hopefully soon they'll be something to help us who still have our peripherals! 💕
super helpful video, thank you!
I would suggest , also using Apple devices that have a zoom option, very helpful for who can't see very well.
Also absolutely do not smoke! It is certain now that smoke increase starguard cellular degeneration.
Glad you liked it and great tips!
Thank you so much for posting up this video. I've had the same eye condition for about 18 years. I didn't know about the dietary side of our condition. I did months of research on foods, especially veges that were beneficial to the eyes, but I never thought to look specifically at foods that were more beneficial to my eyes...I was actually so shocked...any advice as to which foods I should look at that would be more appropriate? Of course I'll do further research, but any suggestions would be a great start:) I understand when you talk about being anti white cane, anti guide dog etc...it's not that I'm personally anti those things, but for a visually impaired person I'm pretty visual, I like to see as much as I can, even if that means zooming in on things and blowing things up to huge sizes...maybe I'm stuborn too haha Thank you anyway for sharing your thoughts. You are truly beautiful.
I know I wish more doctors spoke on the nutritional implications of eating certain food Aisha our disease. I have another video on my channel specifically about foods we should eat. Check it out and if you have any more questions. Message me 🙂🙂🙂
Is the sunlight which is harmfull or uv liggt
Hey Alisha, you ROCK! I had actually heard the vitamin A thing before, but never really got why until you broke it down. Bummer about having to reduce or cut out those foods all together! :-P
I just found your video, so I don't know what other topics you may have covered already, but have you looked into some of the stem cell research they're doing? Fascinating to think there might be a "cure" at some point down the line! :D
+Mo Bra hey hey hey! 😁. Yes I've heard of it a few ppl have messaged me saying they haven't seen an results though which really sucks!
I'm so happy you found my channel and enjoy the content 🙂
Great video! I read that vitamin-A rich whole food is OK in moderation. It's the vitamin-A supplements you really have to watch.
+Matthew Smith its both whether good or supplements we have a misspelling in our gene that prevents us from from removing the vitamin A, it builds up over time and deteriorates our macular. So reducing all forms of vitamin A and beta carotene is advised
Does escoop glasses help with stargardt disease?
I seriously always felt that carrots made my eyes worse.
This is exactly why!! I was diagnosed a year and a half ago. I really need to start taking steps to help preserve the vision I have left. Your tips are very helpful. :)
Also, I use my phone camera to zoom I and read things as well. LOL! Also on my phone I use the accessibility feature that lets me zoom in by tapping 3 times on my phone screen
Helps me read anything on my phone.
The effect of foods high in vitamin A is exaggerated here. You'd have to eat one heck of a lot of carrots to make even the tiniest difference to SD.
I have this condition too n I just came across this video n I fuck with you because I've had this conversation with other people but never anybody like me and you get it you fuckin get it n I also refuse learning that stuff too, we will get a cure within our life time I guarantee it😤
I’m 51 years old. I’ve had it since I was 29. I’ve been to los Angeles Jiu Stein eye Institute. The university of Illinois and Chicago. And the male clinic in Rochester Minnesota. I know I’ve been to the Best. Still no cure.Thank you for these tips. My favorite is memorizing and I use Magnifier’s. It does help tremendously to have a very supportive family. Especially a loving wife and a wonderful daughter who never complains.God bless you and thank you for these tips.
aww thank you God bless you too and your wife and your daughter 💗 Thanks for sharing I know it must've been challenging living with it for the last22 years. Yup our memory is so important now that we can t jsut look at things lol funny how the human spirit adjusts
@@alishainc You’re right about the human spirit. Have a wonderful day!
I had stargarts from 2008 but did not didn't know it tell about 2012 and I found ways very close to you in doing things
Thanks for sharing 🙂
Thanks for this! It's so helpful. Do you have any tips for using your computer? For example, I know video editing software has a lot of tiny text that's hard to read, even magnified. (diagnosed 10ish years)
+jinglewig1 Yes! Get an iMac. It will change your life it's so ouch easier to zoom in with the keyboard shortcuts of the Apple devices either the keyboard or trackpad than with pc
+Alisha's Guide *PC
Hey! I was diagnosed when I was 10 years old, but I started losing my vision when I was 8 years old. It's been 10 years for me now with this condition. You definitely talked about a lot of important things! Do you have any central vision still? What are your acuities? I don't have some of my central vision and my acuities are 20/640 when my eyes work together, but 20/800 individually. I use a mobility cane in school, unfamiliar areas and crowded spaces. I still hate using it, but it definitely gives some explanation and reason for tripping or trying to read something or needing some assistance. I am wanting to apply for a guide dog because I feel like my cane is such a social barrier and my eyes still fluctuate daily. Also, canes cannot find things that are not on the ground, like a sign sticking out (I've hit some of those!). I understand the stubbornness. I still go out without my cane a lot of the time, but then I end up in situations where I realize that I should have brought it. I would say learn how to use a cane just so you could get a guide dog once you are at the point where you need one.
Hey love, sorry your cane feels like a social barrier. I wish it could do more for you. I haven’t gotten around to suing oen because I do have some of my central cuisine and I’m good getting around with my peripheral. My acuity is worse than 20/400, I didn’t bother asking after my last appointment in October becaus it makes no difference to me. I’ve sokem to the mobility specialists, as long as my vision stays stable I shouldn’t need a cane or a dog anytime soon. Thanks for your suggestion though.
Alicia, I am very sorry to hear of your affliction with this issue. I was hoping that many of the younger population could avoid this problem. I was afflicted when I was 8 and had it ever since. I am now 42. I have stabilized, but, am in the final stage of the disorder and trying to preserve as much vision as I can. Alisha's tips are very helpful. In fact, I would add that you may want to wear sunglasses especially on cloudy days as UV light gets trapped quite a bit more on such days. I would also cunslut your eye specialist about food rich in omega 3 and 6 fatty acids like salmon and supplements. Finally, I would also suggest you use your phone camera/magnifier and use the windows 10 magnifier to help with mobile and computer work, respectively. I have been able to preserve my vision at 20/50 with glasses for the past 10 years (20/80 without correction).
Cardio is also a great idea as it gets the blood circulating and gets waste products removed from all of yoru body at a more efficient rate.
Thank you all for your nice comments and support. It is a great thing to be a supportive and enriching community.
Hey Venu, your message sounds similar to my story... I was diagnosed when I was 10, going on 11, and now I'm 39. I just commented on Hayden's message below that I think it's kind of "lucky" for him(/her?) to be diagnosed with this disease now, with all of the cool, modern technology and medical advancements... At least compared to when we were growing up! ;-)
2 questions for ya:
1) What do you mean "final stages of the disorder"? Were you told that you would continue to lose your eyesight until you were completely blind or something?
2) What's up with foods rich in Omegas?!?! -To eat or NOT to eat???
Thanks! :)
+Venu Varanasi hi Venu, thanks for your suggestions. I did mention sunglasses, food low in vitamin a in this video and omega 3/6, exercise and the magnifier app in other videos. 🙂
It's so crazy that in 2017 People are still being diagnosed at the same age as you. I really feel for the ones younger than me because life as a kid is tough enough. I'm so so so happy that you've stabilized. The scariest t part of the disease is not knowing when to get worse or if it'll get worse at all.
Check out ctrl eyewear. I have problems with light/dark transitioning....these sunglasses rock.
Thnaks I’m currently in love with quay sunnies
É loucura que eu vivo com esta doença há 11 anos e não sabia nada sobre os alimentos de vitamina A. Eu vou a um médico público, porque não posso pagar um privado no meu país, e eu sinto que, me falta muita informação importante.
DID I TELL YOU I SUFFERED FROM FUCHS'S WHICH IS AN EYE DISEASE... I HEAR YOU LOUD AND CLEAR... TAKE HEED PEOPLE I'VE SINCE HAD CORNEAL TRANSPLANTS. IM SERIOUSLY LOVING YOUR VIDEO CONTENT TFS XOXO THERESA
+50PLUS2013 I didn't! Thanks for sharing. I'll have to read up on it 💜. Wow you're so brave to have a transplant!
Hey I loved this video! I'm 17 and was diagnosed with stargardts when I was 9 and it's so cool to see (haha) someone who deals with and goes through life in a similar way to me! I always wear sunglasses, avoid vitamin a (but lets face it I will sacrifice some of my vision for mangos), stay organized so I don't have to look for things, and use my phone as my eyes constantly. From what I can tell my eyesight might be a little better than yours but it is inspiring to watch you radiate positivity!
Oh and I'm 20/100
+luchewigg168 Lol I love your passion for mangoes. I had to stop eating them because yes I am a little worse off with the visual acuity than you. I didn't want to play around with the build up from vitamin A so I've been strict about reducing my consumption. I will share a secret with you though, two weeks ago I bought a tea with a few flakes of mango in it because it's just so good (I checked the nutrient content it's for less than.05% VitA though). Wishing you the best on your journey
I was diagnosed with SD in 2021. I just started to notice a grey haze over one eye when going from dark to light a few years ago.
oh no sorry to hear it's progressing so fast. How are you coping?
Super helpful. Actually didn't know to avoid vitamin A rich foods. It's pretty much my entire diet, fruits and vegetables. Smh. Thanks for sharing.
Your body still needs vitamin A for other metabolic functions, so you do still need a certain intake. You should just avoid over eating them, like having a kilo of carrots a day, but that's not to say you shouldn't eat any fruits and veggies!!
Hoy, 6 de marzo, en todo el mundo conmemoramos el "Día Internacional de la Enfermedad de Stardardt".
El Stargardt produde discapacidad y son muchos los niños y jóvenes con Stargardt que pierden mucho de su escolaridad y de su inclusión social.
Hagamos difusión, que se escuche nuestra voz, que se conozca la enfermedad, que los pacientes accedan a sus diagnósticos, que la ciencia nos estudie, que los laboratorios desarrollen tratamientos, que los gobiernos apoyen la investigación.
¡Hagamos que se cumplan nuestros derechos!
¡Feliz 6 de marzo, Día Internacional del Stargardt!
Florencia Braga Menéndez (whatsapp +54 911 2266 3101 EPOFArgentina@gmail.com)
Today, March 6, around the world we commemorate the "International Day of of Stardardt Disease".
The Stargardt produces disability and many children and young people with Stargardt lose a lot of their schooling and their social inclusion.
Let's spread Stargardt, let's do awareness, let's our voice be heard, let's the disease be known, let's patients access their diagnoses, that science study us, that laboratories develop treatments, that governments support research.
Let's make our rights fulfilled!
Happy March 6, International Stargardt Day!
Florencia Braga Menéndez (whatsapp +54 911 2266 3101 EPOFArgentina@gmail.com
Hi.... I was diagnosed with stargardt's disease about 15 years ago..... It's been a rough journey since.......
Thanks for your advise......
devesh can you guide me.i have been discovered with stargardt disease.i have so much problem in reading,newspaper reading,face recognition,colour problem,low night vision,blurness, problem in seeing tv and laptop
Wow, thanks! This was very helpful and enlightening! My bf was just diagnosed with stargardt a week ago, at 36! We are still trying to figure out all the stuff and implications.....
+Barak Paz take your time with it. You won’t learn everything in a day and some symptoms might not affect him or take effect at all
Is there is any tratment in world ??
Hi Alisha B..
Could you get me know what is your current condition of Stargadt as I have also this disease and I am in my early stages.
sure, I've had it for 12 years, 20/400 last time I checked in 2018
more updates in my vlogs😊
I was diagnosed 3 years ago… it’s been really hard. I have a really stressful job I thinking of leaving cause every morning I wake up my is different
Thanks for sharing. Do what’s best for you. Only you’ll know based on the intricacies of your life. Many of your next steps will be made harder by your eye disease, you’ll have choose even more widely than if you had 20/20
You really inspired me a couple of years ago when I first saw this video.
Thanks a lot for sharing…
I have a question though, you suggest to avoid eating Vitamin A rich foods, but I have been looking online for data to support that, and I have found nothing.
I think this is really important so, could you please tell me what was your source?
I'm so happy that you found my content and took the time to comment and content.
As per Vit A, I was told by two specialist to avoid foods rich in vitamin A as our disease Stargardt's ( Fundus Flavinmaulatus) we are missing the gene to properly remove the waste that is created with Vitamin A is not properly removed after the macular part of the retina is supplemented. This is why it' is important to check with your optometrist/specialist before taking any supplements that are high in Vitamin A. With that said, I did see a specialist, 2 years ago who said that we should NOT cut out Vit A completely as it's crucial for our overall eye health. A Catch 22 - if we don't have some in our system, then we run the risk of our eyes, the part not affected by Stargardt's (peripheral vision) undergoing deterioration as it is t 'nourished enough. Does that make sense? If you look up most supplements formulated for macular dengeration you'll see that they usually have lutein and zeaxanthin. Beta Carotene is a precursor to Vitamin A so a Google search should lead you to the correlation to that and Stargardt's, hoops that helps 😊
@@alishainc Hi there Alisha!
¡Hola desde Costa Rica!
Well, it does makes sense.
I remember your videos about starddart disease, helped me a lot when I was still new to the idea of having it.
It just so happens I always avoid eating or drinking Vitamin A rich foods. Someone recently asked me why, and I tried to explain it, but then I thought, how can I support this fact?
Like I said, doing a research in Google did not bring the results I was expecting.
But it all makes senses now.
Please keep doing that great job!!!
Hi, eye disease types can be difficult to diagnose and I have a very similar genetic eye condition that I have been living with for 40 years now. I have a cone rod type dystrophy which is an umbrella term but at least I have a diagnosis along with genetic testing which gave me the faulty gene. My tip would be to have genetic tests carried out to hone in on what your condition is and understand it more. Losing vision gradually is not easy for anyone I like you am anti cane,dog etc but up to now I tend to get around okish with my peripheral vision and must have shades. Another tip would be to try and not beat yourself up to much, life is short enjoy it.😎
Oh wow thanks for sharing your story. Yes, I already saw a geneticist 12 years ago, that's how I was diagnosed
Thank you young lady
NP
Totally feel you
Do you have Stargardt too?
PLEASE REPLY.. hey i am 24 .I have been facing this problem in eye particularly in central vision for around 3-4 years.I have problem in looking to clock and reading time.When I look to clock only one hand is visible nd only the number it is pointing to. I have problem in reading.If i look to any word full word cannot be read in one watch particularly headlines and big font size words like news paper headlines .Though i can read small font size words with less difficulty .At night this problem augments. I have problem in recognizing people face.When i see Television.. i can see only one character whom i am looking, rest characters in television are not visible.I cannot grasp their face fully.If i see their eyes rest face including nose and lips are not perfectly visible.Only half image is perceived. Crossing road is quite arduous work.Half of vehicle is visible and all coming vehicles are not clear so i have to look through boundary vision to get idea of total no of vehicles running on road and their position and distance from me.Sometime i just cross the road by god's trust .Identifying things and objects in table is problem and frustrating.
For around 1 year i am facing difficulty in reading particularly the big headines in newspaper.I get frustrated when i read newspaper so stopped reading it. So i finally went to a ophthalmologist from where i was referred to a retina specialist after so many examination the reports came out bad and he told me its STARGARDT disease.
So just tell me one thing is it progressive or stable.
My wife is diagnosed with this disease today.
Sad part is it is degenerative.
But there are some evolution in the research for its possible cure.
Hi . I just recently found out I have stargardt's disease and I would like to know more about the vitamin A . My doctor told me to eat lots of vitamin a but is it really bad ?
+Janeth Sanchez I just did a video on the enutrition for star facts. Check it out 🙂
Alisha, My Son 6-year-old suffering with Stargardt, recently we have identified it, Doctor Suggested to wear sun glasses, i would like to ask you three things 1. Is Vitamin is good or Bad for Stargradt 2. At what rapid the person's with stargradt may loose vision 3. What more precautions to be taken.
+SrinivasaReddy Konda Hi, sunglasses are a must as I mentioned in this video. Also mentioned vitamin A which is deleterious; it progresses the disease. Everyone is different so your son may experience less or more vision loss than anyone else with Stargardt's.
I have a video coming out in two weeks on nutrients for macular degeneration so keep an eye out for it 💛
is there any chance that stargartz paitent become total blind
ramaraju shankar no
hey. tomorrow i go test some strong glasses. like a -7 or so. to see what happens. i wonder if i can use them for reading at least. hey why laser surgery os not good for us. if it actually cuts a layer of cornea and more light goes to the retina
+Lango guid09 it not good for us because the issue is with our retina. Laser usually helps with the distance inside the eye to fix nearsightedness or farsightedness.
Alisha's Guide yeah i know it won't heal. but it could be a break trough since it alllows more light to the retina.
I am stubborn too I will not use any visual aids and I didn’t use sunglasses (often) until recently bc my doctor said my vision was decaying pretty fast. I’ve had this disease for 9 years now and it hasn’t been a big deal to me up until recently, I turned 16 and everyone wants to know why I can’t drive so I just lie and say I’m lazy and haven’t gotten my license yet.
Oh I know how that goes, sometimes you can be too drained to explain it to others
Thanks for sharing
+Seven Wonder 🙂
I was diagnosed last year 16 now but not legally blind yet or possibly not. Virtually 100 percent get to the legally blind point. I'm 2079 if I'm not mistaken I think it's 2100, they think I'm either going to be 2100 or slightly below. But on top of all this I get loaded with adhd aspergers and scoliosis. I hate this I'd just take adhd over blindness but the thing I fear most is how bored I may get if I can't see too well. Do you have tips on things that are fun for you. Thanks.
Hey Katei TFS your story. Being triple diagnosed is scary but you've come this far, I'm sure your graceful enough to deal with it better than most people if they faced your sitch. Anyway, I like going for walks, yoga, listening to podcasts, rollerblading, skating, going to the beach, mostly anything I used to do that involves minimal reading. Hope for the best, you never know your vision could plateau. Think about what you like to do now and think of little ways to adapt so you can still have fun doing them in case. Really hope that helps!
I also have HDHD as well as stargarts it hard for me to do the things I enjoy because I can't see them not because is blurry but it just to small so trying to find things to enjoy that's is fun is hard
If you can try getting a group together and play D&D if you don't like the idea of dragon magic or whatever change it to be in outer space or whatever you like but the way I play is when ever the story is being told I keep my eyes closed to help me both imagine it and to give my eyes a break I try to keep them close when every I'm doing anything that doesn't need them like talking on the phone or if I'm just listening to a podcast my only problem is my favorite things are things I need my eyes for and I'm scared to lose all my vision before I'm ready
i found out about my condition when i was 11 years old.
on age of 29 i tried to checked my eyes again and it confirm as stargardts disease.
TFS
Hello.... for how long do you know that you have stargardt?
I was diagnosed in 2011
Im very against to uch typing
So, apparently I've been diagnosed with Stargardts when I was young. My parents never made it a big deal, so maybe it's not. But the specialist said I'd be blind in 6 months.... 10 years ago.
My eye doctor said theres some thinning in my eyes, but nothing to worry about. I had to get glasses in the 1st grade. I'm 17 now. My vision has gotten slowly worse, so I'm wondering it will eventually lead me to not see even with my glasses. I have 20/300 vision in my worse eye without glasses. I have the same vision as my 45 year old mom. They suspect glaucoma too, so they're checking regularly? Will there be a rapid change, since I really don't remember if there was a rapid change when I was a kid?
i cant remember which doctor but i had one tell me id be blind by 18. im almost 18? so lmao
Honestly, it's hard to say. I hate it when people say 'everyone is different' it really doesn't help but it's true. I think if you stay positive, balanced and eat well you may be able to plateau the vision loss as one of my opthamologists like to say. I think that if you continue to believe it's not a big deal, it won't be. You've come so far and adapted so much so regardless of which way things go, you'll be better off than someone who is all despair and rai clouds lol
Alisha's Guide Thank you for replying. It means a lot and I agree.
I talked to my parents. A lot of my relatives were blind by 40, so I'm gonna just go along with life and see how my vision progresses. I'll take your advice, and thank you for replying again!
Are there anyways to improve our vision?
research are going mostly if we are lucky enough we will get good treatment
Hi Alisha it's Hayden again just wondering when you have stargadts disease are you aloud to drive just so I know when I am older
+Hayden Beard Hey Hayden! It depends, I haven't be able to for the last 7 years but there are people older and younger than me with better vision who are still allowed to
Alisha's Guide oh thank you how did you find it in school as a kid
Hayden Beard i have had it since 17 im 37 and still drive but think it wont be long before i can't
+Hayden Beard sorry for the late reply I just saw this today.
I found out after a year of tests when I was 20. I fist started noticing I couldn't see the bus number when I was 19 and thought I just needed glasses. It wasn't until I was 21 it was official
Alisha's Guide just to let you know my eye sight has got a lot worse 👀
It's crazy that I have lived with this disease for 11 years and knew nothing about vitamin A foods. I go to a public doctor because I can not afford a private one in my country, and I feel like I lack a lot of important information.
+Diana Cataluna Well I’m very glad you sought out this information since your doctor wasn’t able to provide it. If you have any questions ask away. I’m here to help
+Alisha's Guide Well, actually, I have. If i'm not asking too much, I just wanted to know what tools you use to make life a little easier. I am a 23 year old girl and my phone is my best friend, as you can imagine. Do you recommend anything else?
I am 46, have had star guards since I was seven. I think you’re stubborn for not using a white cane. Helps me out quite a bit and seems to let people know around you that you have a vision problem and they will maybe help you.
I started to use a white cane years ago when I went for low vision training. I didn't want to at first but they drilled it in my head over and over again how important it is to use it. Now honestly I can't see myself not using it. I especially love using it in crowds. Just a gentle tap and people part like the red sea lol. I don't feel helpless when I use it. I just got places I need to go and I don't have time to slow down or trip and fall.
Stubborn isn't the right criticism. Stubborn is y the right word. I represent all the people who are visually impaired and don't have a device that works to system and seeing details and things at a distance.
I'm glad you find it useful and it assists in your life.
9 years ago
Diagnosed with staggardts disease in 2018, it gets worse by the day and it scares me. Why are you so happy in the video?
happiness is a choice
I agree with everything you say but the vitamin a thing confuses me.. I have read before that it should be avoided but at a check up last year I asked was there anything I could do or should avoid and the doctor said that smoking should be avoided which was great cuz I don't smoke but he said I should be eating foods rich in colour like leafy greens and tomatoes... I don't eat any of these so I was worried and was trying to take supplements.. so which is right??? 😂😂 I'm gonna have to research!!
+ no worries it is confusing. vitamin A is good for most people but our bodies can’t break it down so it nourishes but in also destroys because it doesn’t get removed from the muscular when it’s done it’s job thus deteriorating your retina.
Maam I have tested 4 months ago for stargardt disease
wow it's so recent has it sunk in yet? are you in shock, or denial like I was? Hope you're managing the best you can xx
what do you do as a career? i seriously cant find a career path that i can do now AND when my liscense actually expires and i cant renew it... i know you cant answer what i should do for me but i cant find anyone with a career that has stargardts.
+Flyingkordova I’m a hostess at a restaurant. I used to work at a middle school and I hated it lol It is tricky the statistic is 80% if legally blind ppl Rs unemployed but that doesn’t mean you won’t make your own way! 💕
Diagnosed 4 years ago. I'm a senior in art school and just did my first art show in Ann Arbor MI this summer 😁. I love reading, video game,s and anime so like all my hobbies neeeed my eyeballs... oops
TFS! I hope other young people can read that and be inspired to keep up their hobbies regardless of their diagnosis.
My nan and grandad were the only people in Liverpool, England with this disease!
+Free the Knee oh wow!!! It isn't that rare anymore but I can't imagine what they went through being the only ones....