Just Diagnosed With Stargardt Disease?? WHAT YOU NEED TO KNOW
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- Опубликовано: 6 сен 2024
- Watch this if you have just been diagnosed. Watch the other videos in our series to learn everything you need to know about Stargardt's.
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Two Blind Brothers is a luxury clothing line on a mission to cure blindness. Founders Bradford and Bryan Manning were both diagnosed with an eye disease that causes blindness over time. This condition has inspired a special vigilance for details, a passion that carries over into the construction of their clothing line.
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I was diagnosed at 16 yesterday old. I am now 37. I went to eye doctor after eye doctor and finally after being at an infant vision specialist and the doctor threatening that if I don't quit faking this then I won't be able to drive... the doctor stopped and said as a last ditch effort, to go to a retinal specialist. That specialist instantly knew what was wrong when he saw my scans and diagnosed me on that first visit.
During that visit I saw the "hole" for the very first time. My brain was compensating for the hole so much that it was not part of my conscious vision. I saw the hole and was shocked and told the doctor and he said I would be able to wipe it away when I wasn't thinking of it. So sometimes I am symptomatic and most of the time I am not seeing the hole concuously.
I am not saying it is like this for all but I think because I adapted to the issue for so long that this is why I function as much as I do.
I have done construction and even was a lifeguard. I even saved a kid that the other lifeguard was unaware was in need of help.
I also have a son who doesn't have the disease and am expecting my 2nd kid. So don't fear passing it along to the next generation. The chances are low and as a person with the disease I can say my life isn't that bad anyway.
I hope this helps and I am willing to talk to anyone who wants to privately talk about this disease.
Thank you very much for this video. I’m 41 yrs old and I was diagnosed with Stargardts around 2004. My entire world stopped and changed when I was diagnosed. I also suffer from chronic migraines since 1994. Depression and Anxiety are at an all time, and I’m seeking counseling. I want share my experience in some way, maybe a podcast.
Very good
Stargardt's didn't stop me from being an Aspen ski instructor!
I my self have a (another) form of JMD. My sight at this moment is 0.02 (according to the WHO I am blind). But I know so much people who have Stargard who are (for example) a Professor at University, a Mayor in The Netherlands, a building engineer (like me).
I too have Stargardz disease it is so good to find other people who also have Stargardz I have not found many people with this disease I only know 2 other people in my life NO w because of you two brothers know of a whole community .Thank YOu for what you are doing to help find a cure for this disease and keep up the great work . Gloria
Thank you for posting Gloria! You are our inspiration!
@@TwoBlindBrothers I am also Visual Rehab Instructor as well maybe can call you sometime to maybe speak about our disease and share your story .
Hi guys! My name is Ann I am from Russia and I am 26 now. I've been diagnosed about 5 years ago at that time I just freaked out and decided that if I wouldn't think of it I wouldn't be that much scared and I'd just have to deal with that on my own. Years passed I realized that maaaybe it wasn't my best decision after all. Now I am at the gathering information stage. Next week I'll see the doctor to learn more about genetic test and how to do it here.
Btw, that really sucks to READ the comments though it s also really comforting knowing you are not alone. Donno about you but I keep making screenshots then zooming and then reading as its a bit easier and faster this way. Good luck to all of us!🙌
Definitely! We support you! You are our inspiration!
My 43year old daughter has this disease and the eay she has adapted is amazing, im very proud of her😊she also has a17 year old son, and brought him up soso amazing,hes now a credit to het
You guys are great. I am 30 now and have been diagnosed at 18. I wish there would have been a channel like yours back then. There was no real information out there from people who actually have it. There were only doctors who told me I would lose most of my vision. I was terrified for years and cried a lot because I was so scared. Only when I hit 20/200 and realized that it was not nearly as bad as i would have thought, I calmed down. I was afraid that I would not get a good job and that nobody would want o be with me. Now I am an elementary school teacher and have had a great boyfriend for over 5 years. My life is good.
Especially with all the technology that is out there this disease is very manageable.
One thing that I would like to say to parents of kids with stargardts: try to not let your child see how upset you are about the diagnosis. I was 18 and seeing my parents cry and upset because of my diagnosis made it so much worse in my head, because to me their behavior confirmed my worst fears and basically told me that i am right to be scared, sad and upset because my parents were too. I can only imagine what a younger child goes through seeing their parents like this. I know it is scary for parents too and I don’t blame my parents for reacting that way. It is only in retrospect that I would tell other parents to try to remain calm in front of your kid.
Also, go to a doctor who has actually seen this disease before. All my „normal“ eye doctors that I went to first had not seen this disease before and just told me scary things they had read in books or heard at med school. Once I went to a specialist it was a whole different story because they stayed calm and told me that it would not be as bad as it sounds to most people.
That’s all from me.
Thank you guys again. It is always good to see somebody who walks in the same shoes :)
Thanks so much for reaching out, and sharing your story! We absolutely love hearing from people who have gone through similar challenges as we have or have loved ones that have. Science and technology have advanced so much over the last few years that we really are confident that finding a cure is not a question of IF but it's a question of when. It means so much to us to receive your message and for your words of encouragement, and we wish you the best!
Thanks for joining us on our mission for a cure!
Sarah J thank you for this message!!
I’m canadian and not Really bilingual so scuse me my english lol !! My 7 1/2 Years old daughter received the stargardt deasese on past november and i’m so scare about the futur !!! She’s already legally blind because she’s only see the big E on the chart... but she’s very good to do everything on their Life !!
I try to be calm, not crying and and not thinking to far away but It’s not easy !!!
But your messages and the two blind brothers help me to think that my daughter’s gonna have a good Life
Thank you very much
My brother diagnosed with stargards 6 years before and he did engineering ...
Hope we got treatment of these disease in near future ,may Allah bless all of us
Thank you for telling us about him Sinah! That is our goal! To fund enough research for better treatment and maybe even a cure!
I was diagnosed with Stargardt'S Disease 35 years ago in my right eye only. By the age of 17, the disease progressed to my left eye. I am currently legally blind, however, you are right, it doesn't stop you from living a normal life. You just have to learn to adapt. Living a life with Stargardt'S Disease has some difficult moments, like not being able to drive, not being able to clearly see your children playing soccer or hockey, but I have made the most of it. I am blessed to still be able to see many things. It have been able to do many things in my life in with my disease.
So proud of you Kimberly! You are our inspiration!
Ty I really needed to hear this. I just got diagnosed at 28 but it appeared abruptly 3 yrs ago. Mine seems to be progressing slowly withinf that time frame but man everyday tasks just seem so much harder and messes with my confidence..I know I can do it mentally but then the physical gets in the way and it's frustrating..
Hang in there. You will find ways to adapt and be able to do things but in your own way.
Hello. I was diagnosed with Stargardt in 2016. I was a 20+ year practicing dental hygienist who began struggling at work and did not know what was wrong. I am now in my 50's and struggling with losing my career. The hardest part for me has been dealing with the moving lights in my blind area. God bless everyone affected.
Thank you for sharing your story. You are our inspiration to fight to find a cure!
do you have children, if are they affected from the disease please tell
Thank you so much for the information, am from Zimbabwe and when I had this they did not have any clue about this diseases until years later I moved to South Africa that's when I was told I have this disease, it has not been easy at all , I wish to have friends with this disease so we can share our ups and downs.
My daughter was just diagnosed at 18. This was one of the most helpful videos I have seen. I will most definitely be checking out your others! Thanks so much for sharing your stories, it truly does help most to hear from those who are living it.
Absolutely Tracie! Your daughter is our inspiration to fight!
This is amazing. Im about to binge the rest of your videos! I'm 20 and I was diagnosed in 2017 after a DNA test and have been reluctant to research deep into the world of stargardts, as it quite honestly scares me to death. A little thing you've mentioned about living in the now and not in what 'may' or 'may not' happen in the future is a massive thing I think EVERYONE with stargardts should remember. Can't wait to continue watching and have some more peace of mind from all the knowledge you have to share. A massive thank you.
Fellow stargardtians!
I have Stargardts and I am a big fan of Oakley Prizm Polarized Sunglasses. They really help with glare and contrast!
I've been diagnosed with a similar disease called "Best", couldn't find anyone who had it anywhere but when I found your videos, it provided me with a lot of comfort. Mostly, I am pretty scared about living without central vision, since mine has now started to be affected.
I admire the both of you for your attitude about your Stargradt Disease. Learning to live with a life limiting illness, in your case blindness is a choice that is difficult. Your willingness to help others is remarkable...and I'm sure appreciated by parents and grandmas and grandpas. You are fine example of humanity who cares about others. Again I admire you greatly.
We admire you Marlene! We appreciate your support and help with spreading awareness for the cause! Thanks to you a cure is in sight 💪
Great video guys. My son has just been diagnosed with macular dystrophy. We are just waiting to see a specialist to find out the sub type. He’s lost 90% of his central vision by 10. Optometrist told me he wold be blind by the time he was a teenager. As you can imagine my world fell apart.
But watching videos like this gives me hope. Thanks again Parents need information like this to help us push through and focus on helping our children’s needs.
He is our inspiration! Thank you for telling us about him!
Thanks so much for making these videos. My boyfriend recently got diagnosed with Stargardt’s disease and I’ve been thinking a lot about our future but like you said, we should just focus on the now. He is still in the early stages and his eyesight hasn’t digressed but I’m so thankful for these videos because I feel better about how I can be the best support for him and that I can understand him better. ❤️
We are so sorry we didn't see this sooner. Absolutely our pleasure to help! We love that we can make a difference!
But your next generation will be career stargardt disease. like me
Thanks a lot guys. Words cannot say enough what this video means to me. May all your dreams come to pass.
I have just been diagnosed with Stargardts and I am an adult. I even have two brothers who also have had it for 15 years or more. I hear its super super rare for 3 siblings to have it but I am not sure about that.
Thanks for the video. I'm 48 and just diagnosed with Stargardt's disease.
You are most definitely welcome!
May you get cure
Amen
Both of you are seriously amazing! I can't believe how I just took that breath.I was diagnosed about 4 years ago.I cried and thought I was going to be totally blind soon.Long story short my retinal Dr. wasn't very good at communication etc.I mean,I just thought to look on youtube about Stargardts.I'm dealing with people at my job that think I'm faking my disease btw I'm a mail carrier! Thanks guys.
Stargardts sucks so hard. Wish there would have been a video like this 15 years ago when I was diagnosed. You guys are great!
1. Within 2 hours after applying nano-grade eye drops, lipofuscin can be excreted from RPE
(retinal pigment epithelium) to outer cornea.
2. To apply nano-grade eye drops 8 times daily for consecutive 3 months, it's plausible that
vision of Stargardt's patients can be restored.
Nano-grade eye drops can effectively treat Stargardt and help Stargardt's patients restore
vision but can't cure Stargardt because lipofuscin is being produced every day.
Please browse www.godforeye.com
All glory belongs to God !
Thank you very much for this video, my girlfriend has just been diagnosed with Stargardts recently, I'm broken and I feel really worried, my mind is full of bad thoughts, but now I heard your experience living with this disease and how it really is; makes me feel calmer and collected myself, I'll be taking seriously your words and gonna do my best to past through this leg and see the upside Thanks a lot.
Thank you for telling us! Your girlfriend definitely will need your support and it sounds like you are more than willing to help her! Your strength will be what helps her!
I look forward to see more!
i have dyslexia as well as stargardt's so reading has never been easy for me. i never actually noticed i was going blind when reading because words move around when i read.
Thank you for sharing that with us Emily!
Anyone out there that is more rare and dagnosed between 30 and 50? I was just diagnosed at 46.
I was just diagnosed on Friday. It was very much out of left field for me and the adjustment and processing has been difficult but I'm becoming more hopeful as I learn more about he technology that's available and hearing stories like yours. These videos have been extremely helpful!
Good d day, nice sharing from both of you twin brothers.. i was living with stargardt's disease sinced 2006. Anyway don:t give up and always thankful to God..roseline
You are our inspiration Roseline! We will never give up! Thank you for posting!
I was diagnosed with stargarrs disease about 7yrs ago. However it didn’t totally change my life. It’s a huge inconvenience especially when it comes to reading, but I found that understanding who you are and focusing on your abilities to communicate overcome most if not all of the disease short comings. I do wish Americans understood what stem cells actually are and see the benefits of stem cell so the clinical trial that’s showing a 92% increase in vision could be available in the states.
Absolutely!
Wow spoke on for me kept failing the eye chart in kindergarten 20/200 in one eye 20/400 8n other. I'm 39 . Just decided to RUclips it today just to connect & gather more info .
Here's an updated video on how we see Stargardt's - ruclips.net/video/FGu7zkI_CKk/видео.html
Hey guys! I just found your channel and I’m really enjoying it so far! I am also blind from retinitis pigmentosa. It is still very interesting to listen to your videos and your perspectives! Thank you so much, I look forward to more videos from you. Matt
I am super lucky in that the National Eye Institute at the National Institutes of Health is about 14 miles from my house. I got diagnosed about a year ago at 37 and I was able to get genetic testing at NEI. I am in a natural history study there right now and am being followed by an ophthamologist who does nothing but genetic macular disorders.
How is your vision?
I have the same eye disease it was detected about the first grade probably around the same time you guys said is definitely difficult because most people don't understand what you go through
Hello. I am at the process of finding out if I officially have Stargardts. I was sent to a eye dr for a check up because of pills that I was taking. The eye appt consisted of photos of the back of my eyes. The dr sent me to a specialist based on the photos. The specialist has all but confirmed that I have stargardts and has recommended me for genetics testing to verify if i have this. But i also have an aunt and an uncle with diagnosed stargardts, so it is likely I will receive the same diagnosis. I am a 36 year old female and up to this point have not had any symptoms that I would associate with stargardts, but I am still learning. I have near perfect vision at the moment, but am i little scared at what is to come. This is my first video, but I thank you for sharing your story.
Thank you for sharing your story! We absolutely love hearing from people who have gone through similar challenges as we have or have loved ones that have. Science and technology have advanced so much over the last few years that we really are confident that finding a cure is not a question of IF but it's a question of when. It means so much to us to receive your message and for your words of encouragement, and we wish you the best!
It is NOT a juvenile form of macular degeneration. It affects all ages. I was diagnosed at 55.
That sucks. I wish it was juvenile as knowing it can happen later in life means anyone could have it and not know it until they are much older.
I am also suffering from Sach disease I hope in future something will come to help us to see this wonderful word better.
Please aware me about new researches and findings thank you
Thank you for telling us about yourself! We get all of our best information from this site! www.fightingblindness.org/ They can definitely give you some great information
Nobody's ever told me I should limit my vitamin a intake I'm just recently finding this out. I would use diagnosed in 1994 at the age of 10 at that time I was 2030 in 1 eye and 2040 in the other. 2 months later I was 2200 in both. Now I'm somewhere above 2600 it's getting harder to Know for sure. Besides my center of vision being non existent my peripheral vision is like walking through fog all the time now things are getting harder and harder to see Getting more and more headaches and it seems like my field of vision is decreasing.. Going to be looking for a new eye doctor as this one does not seem to know anything about vitamin a intake hes just the best we found where we lived looks like I'm going to have to do some traveling. Don't know maybe there's something else going on along with the S TAR GAR DTS. I have been in the blind community a lot since about 15 after people I know with star guards their vision did not get worse after 2200 however I know some but it gradually kept getting worse until almost total blindness in their thirties and forties. It was crazy because some teachers that had starred that I knew were like you should be able to see this I have the same diseases you trying to explain to them that no I can't see this wasn't easy. Wasn't tell a another staff member that had star guards was like my vision is a lot worse even know we have the same disease it made the other 2 teachers realize that not everybody star guards stops progressing.
Thank you - you made me realize I’m not alone! 💙
You are not alone! We are in this together!
I am currently waiting on results of genetic testing for Stargardts disease. I found out (as a 30 year old woman, in my last semesterof nursing school) after a Lasik consultation and I've been trying my best to just.. process everything. I'm hoping that, if its Stargardts, it's a milder progression of vision loss.
Thank you for letting us know! Please keep us updated!
Thank you I have RP and it is good to see people sharing about other genetic eye conditions.
You are our inspiration!
Thank you for this! I have agod friend whose eight year old daughter was jsut diagnosed. Were all doing research and teying to get the daughter into clinical trials and get the new treatments coming out now. What are your opinions on the news stuff? Alk-001 pills to make the vitamin A properly function and eye injections to correct the macular problems? Thanks again!
I came across your brand and I am amazed! I don't have Startgardts, but I have Retinitis Pigmentosa. Which is the opposite of Stargardts. Thank you for sharing!
Thank you for sharing! You are our inspiration!
I was just diagnosed after a year of many drs appts, and I'm kinda worried about it. Thank you for this video.❤️ I'm only 13.
Thank you for telling us! You are our inspiration to keep fighting!
@@TwoBlindBrothers aww thank you!!!
And I experienced thus when I was at least 8 years old and it gets worse threw out my years
I'm eighteen right now and was just diagnosed after about seven years of telling everyone around me that "I can't see" and them simply taking me back to the eye doctor and them changing my prescription. My vision had been corrected at 20/30 for s long as I could remember but it recently spiked to 20/60. Over the past year, I've been sent to six different eye doctors who could barely tell me anything.
I had to travel half way across the country to see a doctor specializing in macular degeneration to finally be diagnosed.
Now I'm in my second semester of college and I'm trying to figure out how to proceed. I was wondering if anyone knew how much vitamin a is too much and perhaps had an idea of foods and such I should avoid. Any insight would be greatly appreciated. Also, thank you for making this video. You have put a lot of my parents and my fears at ease!
Hey guys I'm blind in one and my girlfriend has sudo tumors (sorry for spelling) and loosing her eyesight. Hopefully your Fondation finds a cure for her and all the others loosing there sighr
You both are our inspiration! We are super confident they will!
I was diagnosed when I was 16 getting my restricted license well my parents put the brakes on that. My youngest sister has stargardts also. I'm 55 now. Doing well with good peripheral vision. I knit and crochet. I don't let stargardt stop slow me down (except in driving lol). I have learned you can do anything you want with a positive attitude. Great video.
Hello guys, i am really glad to see you guys sharing your experience with Stargardts as I can understand how difficult it could be to overcome mind state. I have Stargardts as well and still life is great and challenging. I don’t let it get to me too much and take a day as it comes. Would love to chat with you more, perhaps there is a platform where we can interact ?
Hi! Thank you very much for your message! Can you email us at hello@twoblindbrothers.com and I can send your information to Brad and Bryan?
Hi everyone! I am 31 and I was just diagnosed with stargardts disease. Needless to say, I'm going through highs and lows. BUT I am trying to be as optimistic as possible and know that there are advancements in gene therapies everyday. Have you heard of anyone who has had any luck with any clinical trials? any info would be much appreciated!
Hi Taylor! You are our inspiration! Our go-to website for all sorts of information is www.fightingblindness.org/
Who is the number one mind on this disease on this planet? Interested to follow the latest research. Thanks so much. Love your vids!
Great question! We rely mostly on this website for all of the most up to date research information. www.fightingblindness.org/
This video helps a lot to show to others what we have. And i wanted to ask everyone, who are facing these problems how do you all choose your career and job as working on computer and difficulties in adapting the ligjt is really is challenging. I can say this as i myself am suffered with stargardt. So please do give me your suggestions and career plans. THANK You!!
We love hearing from you! You are our inspiration to keep fighting! We would definitely recommend all of our videos to help you with suggestions!
@@TwoBlindBrothers sure. I'll definitely go through it . Thank you
i am a student suffering from stargardts and i have problem reading books is there something that can help me read
Try to put more light aid while u are reading my brother has been diagnosed with stargard and he did his Electrical engineering while havinh this disease ...
So dont loose hope ...
We are on.way to find cure In sha. Allah ..
I have that desese and I have been threw a lot and I'm going to duke and I can't see small print and when I look streighy at someone's face its a blind spot I half to look to the side to see you
1. Within 2 hours after applying nano-grade eye drops, lipofuscin can be excreted from RPE
(retinal pigment epithelium) to outer cornea.
2. To apply nano-grade eye drops 8 times daily for consecutive 3 months, it's plausible that
vision of Stargardt's patients can be restored.
Nano-grade eye drops can effectively treat Stargardt and help Stargardt's patients restore
vision but can't cure Stargardt because lipofuscin is being produced every day.
Please browse www.godforeye.com
All glory belongs to God !
Thanks for the information. My wife has diagnosed as stargardt's disease. From some video I see they are preferring for esight vision glasses. Please tell me whether they are helpful
Can you email us at hello@twoblindbrothers.com with your question?
Diagnosed at 30 but I have started losing my peripheral vision also. So my fear of everything going black seems real. Anyone else have Stargardt but also losing their peripheral?
Hey bros ,First of i want to apprecoate for the awesome work you are doing.It would have been very hard for you to cope up but your tood well against the disease.You are really source of inspiration to me..I have some querries
i have been recently diagonised with stargardst.I am 24 years old. I am preparing for govertment job.So preparing for government exams of my country but it becones very didficult to figure out figure based questions.for egs triangle inside a triangle.During night or dark the problem augments.My vision currently is 6/9 nd doctors says its good vision and i cannot get a certificate to apply for relief in exam.My question are many but some main are
1. Is this disease progressive.Will my eye condition deterioate further or will be steady.If it is progressive then how much time it take to worsen.
2. Please share your story when u were diagonized and how much time it took your eyes to deteriorate further.I may get help from this.
Please reply soon brother!! nd sorry for language nd typos error
Im struggling SO HARD to cope. I was diagnosed 3 years ago. Havent been able to drive at night anymore since then. I have small blind spots in the center that have gotten worse this past year & recently where every few letters disappear when I read. Dim light is worse. The ring of lights I see is always there even w my eyes shut. I have to look above some thing's now like peoples faces to see them clearly. Everything I do and am as a person that I love is & always Has Been sketching & drawing & reading & writing & now I feel its all being ripped away from me. I didnt get this when my life started, I got this at 28 and now im 31 when I thought my life was going to start. I want to die. Just kill myself. What alot of people dont get is that sometimes getting hit w a disease ISNT the first hardship someone gets in their life. Ive had a very long hard life. I never had parents. I raised myself. Im virtually all alone. All I have going for me is my intelligence. I dont have family & im not married. I wanted to be a Great GREAT success in my dream career field ive been pursuing in college. Now this? Wtf is this. Should I iust throw it all away? Everyday when I wake up im afraid to open my eyes now im so afraid I ask myself "is today the day it finally progressed"? I wonder how should I be using my time the best with my sight but I have no money anyways. Ive always struggled with serious depression but now this makes my anxiety go through the roof. (Yes I have a therapist btw it barely helps w something like this). Ill never be destined for greatness. Im afraid I cant cope & a happy life with this is just impossible.
It sounds like you've had a really tough experience recently. The visual challenges add a greater burden to an already difficult situation. It's hard to fully know what you are going through, and it's out of line for me to offer any real perspective or advice. That said, it is critical to surround yourself with family, friends, and professionals. These are your resources and it's not possible to overcome certain challenges without the right resources. Secondly, whenever you are dealt a bad hand or suffer bad luck in life, it can be flipped. A person who can run a mile with weight is stronger than someone who runs that mile without weight. That's what happened for my brother and myself. Every accomplishment felt even more rewarding because we knew that it meant we were that much more resilient. Failing is inevitable no matter who you are, but what separates people is there creativity, resourcefulness, or spirit to keep going. The greatness is not what you achieve, it's your perseverance during the journey to get there. If you want an example, search and watch this video "Claire The Documentary"
Nothing is impossible for god. Have Faith in god. There will be a cure come up soon in the near future.. don’t give up...
Could someone please help me I'm 30 and found out when I was 21 and have found out that I have started loosing I need more infor please everything I have found isn't what your telling me I live in a small town in upstate ny
Hi Cassie
Can you reach out to us at hello@twoblindbrothers.com? We would love to see how we can help!
Namaste, I am from India
I am suffering with the same disease
I want to change my cell phone now I am using Android device
Should I switch to iPhone 11
I only need zoom option to operate my phone
Does the Apple give me ease in the operation
Brad and Bryan haven't ever used Android, so we can't compare it. That said, they love the accessibility on Apple. They use three main features:
-triple tap zoom
-two finger swipe down and selected text for text to speech
-taking photos and zooming in for restaurant menus, signs, etc.
Everybody has different preferences, but I hope this is helpful.
@@TwoBlindBrothers Brad and Brayn
You both are doing great
Lots of love from India for amazing brothers
Is it possible to just have it in 1 eye
Great question and thank you for asking! We use this website as our best source of information about Stargardt's Disease! www.fightingblindness.org/diseases/stargardt-disease
It's no big deal. Stargardt disease can now be reversed by Lorati's nano-grade eye drops.
Whete is svielblr drops
This is misinformation.