Your story was so familiar to me. I was diagnosed with Stargardt's at 10 and remember the diagnostic tests, the large print textbooks, and always sitting on the front row, sometimes in a desk pushed closer to the board. I also had the experience of a retinal specialist (the same specialist who diagnosed me 40 years earlier) telling me that the progress of the disease didn't look like Stargardt's, so perhaps I was misdiagnosed as a child. As in your situation, a genetic test confirmed it was Stargardt's. Thank you for this. I know you posted it some time ago but I just heard it today on your podcast.
Thanks Sam. I also have Stargardts. I was an exception to the normal course as I had 20/20 vision until I was in my mid 60's. I was able to practice law in a courtroom for years. Now I have all the characteristic limitations. Reading print and seeing facial features of people are the most significant. I use computer software called ZoomText and all sorts of adaptive equipment to allow me to keep doing office work at 73. I consider myself extremely fortunate.
We tend to take eyesight for granted until we have problems. I have had 5 retina detachments, I have scleral buckles on both eyes. Cataract surgery in both eyes & multiple laser and cryotherapy's.I have developed advanced glaucoma in both eyes from all the trauma from the surgery's.I think that's it but I'm starting to lose track, Oh yea I have diplopia too. LOL I can actually see pretty well out of one eye considering, I have a fantastic retina specialist he saved my vision many times! I'm having optic nerve trouble now, my glaucoma is starting to win the battle just in the last few months. I'm afraid I'm headed for the dark room soon. I'm probably one detachment away from it anyways. But I have prepaired myself mentally for this final chapter in my life, even tho it's hard not to be a little afraid of whats to come. I find your content very informative & interesting. Thanks for posting sir.
Thanks so much for your video. My son was diagnosed with this condition during the 3rd grade, I felt guilty and devastated. Now my son is 27 graduating in this month with his bachelors degree and will start as a teacher next year teaching children with vision problems. Thanks you!!!
That’s truly awesome! Please tell him I said congratulations and he should be proud of that achievement! Always happy to hear about people thriving with vision impairment!
Sam thanks for sharing. I can relate as I was born with high myopia which then progressed to myopic macular degeneration about 18 years ago. Your TH-cam videos are undoubtedly the best videos on TH-cam for our community. Keep up the good work.
Thank you for your channel Sam, Andre has introduced you to me with our shared emails as I am in online college at Southern New Hampshire University at 52 years old and was diagnosed with stargardt's at 14. I was legally blind by 16 but graduated high school and went on to beauty school and became a hairstylist for 30 plus years. The struggle is real but I never let it stop me. I'm currently halfway through my degree at snhu in business administration. They are working on the setup that you have to enable me to get work done faster and get through with les struggle. You inspire many, keep rocking the Stargardt's and blind life! 😁💪🏻👍🏻🥰 Catherine Myrga Owenton Ky
Sam, I can so relate to your confusing diagnosis. I was diagnosed with macular did generation around 20 years old and felt that was in accurate. So later after further testing was diagnosed with retinitis pigmentosa. They have constantly run a visual field test saying that my peripheral vision should be shrinking and over and over I have explained that my peripheral vision is perfectly fine! So, had my genetic testing done a couple of months ago and still waiting for results. I have a visual acuity of 20/500 corrected, nystagmus, photophobia, and loss of color vision. I also have one blind spot in my right eye. It’s frustrating to just not know! Thank you so much for sharing your story love your channel.
Thank you so much for all your helpful videos, they are really useful but also and probably most importantly, very encouraging, I have damage to the retina on both eyes and have lost almost all the vision in my left eye and the peripheral vision in my right eye due to a combination of type 1 diabetes and epilepsy, your story and your videos have got me to begin using a cane which is very helpful and also just been very positive and again very encouraging, thanks again and God bless you. Joe
Thank you for sharing this Sam. I think I would feel the same way if a doctor told me I didn't have Stargardts after all :) But I hope (and I know you do) that you know that you are far more than Stargardts. You are an incredible ambassador for people with vision loss across all spectrums. I share your videos with everyone that needs a boost or knowledge. I have watched every video you have loaded. Binging the first bunch in 3 days to catch up. It has been so valuable to find someone who can articulate the many complexities of vision loss in such a positive light :) Much love to you always
Hey Sam, great video! It was fun listening to this one on more of a serious note and getting to know more about you and your vision loss. Awesome video! Thanks again, Matt
thanks for that Sam, I enjoyed watching/;listening to your story. I have learned so much from your channel in my short vision loss Journey (Just since June 2018 - when I down and fed up about it, I( come on TH-cam and watch channels like and including yours..I may even do my own vid haha
Omg my beautiful brother i would absolutely love if you would put together a video of the tricks and hacks that you did/do to get around seeing things as a visually impaired person that would be an awesome valuable video 😁
I’ve been there, sharing your same journey I really appreciate your video, it was so awesome Do they on 43 2400 in both eyes, and I still drive my bicycle live alone and have my own business As you say I love to be like this, I do not imagine my life without it Thank you for sharing
Mine is Congenital Cataracts. I see about 20/80 in my good eye and 20/300 in my bad eye with a 15% peripheral. Like your eye condition, mine is also hereditary My grandmother, mom, me, and my two siblings have it. I see the best out of all of us. Thankfully I've never had to lug around massive big print books, but the braille books my best friend lugged around was MASSIVE!!!!! Also, I never was made to sit up next to the board. I had a monocular I used to read the board, or I recorded the class. I did also get bullied, in fact, so severely it almost lead to suicide. My mom then pulled me out of that school. After that, everything was much better. And yes, I've driven several times (not legally of course). I also ride a bike.
THANK YOU SOOOOOO MUCH FOR THIS VIDEO!! I was born with eye muscle issues and my left eye was always lazy and later down my eyesight journey…I was diagnosed with Keratoconus at my mid 20’s and 4 years agoI had my corned transplant and actually got 2 shots of Covid and it has made my vision much worse and I will see my eye specialist next month and want to know where my vision stands for now and what my future for my vision holds for me…^____^Thank you!!^____^
Sam, you are the man! I have watched you for awhile now and I like your videos. They put a true explanation to others from the VIP point of view. I am from a family of 8 children and 4 of us are are visually impaired. Two, including myself, sre legally blind. As you state, it is an adjustment, but once you accept, you control the power over the disease. Your videos are informative to the VIP plight but also demonstrate useful products that can help in daily life. I appreciate what you do and thank you for it. I wish you much success in getting a little financial success with what you are doing going forward. You keep making videos and I will keep watching and spreading the word about them.
Thanku sam I’m a patient of nystagmus and seriously it did happen to me as well n still facing these problems Thank you so much for your video may b it can motivate me too❤️
Bro I just found this video on your channel and let me tell you I totally understand what you went through my friend God bless you and your family play
sam, just found this channel and it is amazing! I was diagnosed with RP over 15 years ago at the age of 14. Can relate so much to your storeu of school and the Uno comment made me laugh outloud. I have never been involed with the VI comunity but am trying to start now.
Hey Sam, glad I came across your channel today. I too am a “proud Stargardtian” if you will. I’m almost 27 now, I was diagnosed when I was 3. School was tough, really tough. Here in India we aren’t equipped with the kind of facilities like big-printed textbooks so I would just stick my neck right into the book. Obviously the other kids would find that hilarious. But I came out of it a much stronger individual and was able to manage through college and emerged out of it successful. I even played on the school and college football (soccer) teams. I now work and I can drive wearing corrective lenses, but I avoid high speeds and night driving. I love reading (God bless the Kindle with its zoom feature) and hope to write a novel some day. (As if that wasn’t hard enough with normal vision, eh?) So on the whole I lead a pretty normal life. One issue I do face is eye fatigue. After long stretches of reading or looking at my phone I feel like my eyes just ran a marathon and need a break. Is that common?
I also have Stargardts. Went through, and continue to go through similar things as far as school, doctors, ect. My least favorite eye test is the ERG. 😱
HI SAM. THANKS FOR SHARING. IT IS GOOD TO HEAR YOUR STORY AND TO GET TO KNOW YOU A LITTLE BETTER. HOPE YOU AND YOUR FAMILY ARE DOING WELL. TAKE CARE MY FRIEND. UNTIL WE SEE YOU IN THE NEXT AWESOME VIDEO!!!
Thanks for sharing your story Sam. I will be interested to hear more about the genetic testing that you had done. I look forward to hearing more about that and where genetic testing can be done. I appreciate your channel and I've learned a great deal from your videos.
Hi from Turkey Sam! You're really great person and I'd like to meet you. My brother got Stargardt disease but he isn't as strong as you. So I'm proud of you. Always be strong and positive to life 💕
Thank you Sam for your video(s) I came across today. You are so amazing with such a great attitude. I was glad to hear about the Orcam device, DNA testing, other helps for "low vision". It seems the vision field continues to expand and grow with new conditions, treatments and prognosis. Your an inspiration. God bless you! I've subscribed to your channel and look forward to your further posts.
My mom who has Stargardt's got diagnosed in college. She had a car and license. I used to have dreams where I had to help her drive from the backseat. Voluntarily gave up her license (there's no regular testing in the US it seems)
Hey Sam, I am from North Carolina. I went to that same summer program back in 1978. That lets you know just how old I am. Back then it was held in Butner. My vision was 20/200 back then, but I was not brave enough to ride a moped in the big city.
Your video s are great ... in 2006 I had a extreme allergic reaction to medication - Steven Johnson syndrome / TENS was basically burned from the inside out .. like I was in a fire ... my issue cornea issue in the shape and scarring of my eyeball I have one eye that works the sea with and one hide a day evenly scarred that’s like looking out a frosted bathroom window so I do to have low vision so I find your channel informative and helpful ... we all just try to get through and continue on the road of life thanks man !
Thank you for sharing this Sam! Could you make a part 2 with a continuation of what happened after you finished your education? I was really getting drawn in and then was like "and then what happened"? Like when an interesting book gets abruptly cut off
Hey Sam, I too have Stargardts I think but I don't let it define me. According to Juliet "A rose by any other name would smell as sweet" Perhaps we could get a T-shirt emblazoned with the strap line "I have Stargardts but I don't. # it's complicated"
I know Sam said there is a hole to put the lanyard. I found the hole, but not quite sure how to put the lanyard in the hole to keep the clam shell from coming out. I guess I need a tutorial on lanyard insertion. Any suggestions. Maybe Sam can include that in his next video. Amy suggestions. Thanks.
I was diagnosed by one Dr that says I have Ocular Toxoplasmosis. 2 other doctors disagree but can't diagnose mr so I just with the ocular toxo diagnoses as for the reason I'm losing my vision
Hey Sam love the video. I'm about 5 years older than you so I can relate to your struggles in school man! Also that would be awesome if you did a live stream with your buddy about your, "Born to be wild" days. I would definitely tune in for that!
Great Story! My Brother and I same thing.....Achromatopsia. You cracked me up about School......you cannot hide it. I forgot about those goddamn volume books too! Blindsports like Goalball and Technology saved me. I have worked in Tech for the VA for almost 25 years. Love your channel......
Thanks for your contributions to ou lives. The svhool sounds great but I am an adult newlyweds blind and I am having trouble finding a short live in profram to teach me how to maintain my independence as I intend on o move into a new place-alone or with a roommate. Except I am challenged so drastically. Can you point me in some direction for Santa Cruz Ca?
Hello Sam , it's my first time watching you , thank u for ur video , I have stargardt disease , am from Egypt even doctors here don't know alote about this disease , am really afraid and disappointed
I was diagnosed at seven, my brother also has stark arts, I’m 46 now he’s 43. We ran into some doctors who thought it wasn’t Stargard, but it is, some doctors just don’t know what they’re looking at for sure.
The largest print text books! Thise were a lot to carry!!!😅 please do a driving tips and hacks video! Does your sister drive scooters/mopeds too? If I didnt live in a city with heavy traffic, I would think about getting a scooter
thanks for this Sam. Im still not 100% quite sure what i have, although i have been informed it is Stargardt's (late onset??) I am 47, was diagnosed at 45. I have not yet come across anyone with late onset Stargardt's, perhaps if anyone is out there you can reply inline with this comment. I am yet to have the genetic test done, in SA this is very expensive, however have had an angiogram done with by Opthalmologist, and the results show pigmentation behind the macular, and a bulls eye formation. Im clearly still in early stages, but was wondering if anyone knew a rough estimate timeline from been diagnosed to been diagnosed as legally blind. I can still drive, although not very well at night time. since Feb of this year, i have noticed my left eye has developed a blur, it is so irritating, I keep thinking my glasses have a smudge. So yes, is there anyone out there that was diagnosed with Stargardt's later in life, please give me a shout!
I have heard of others getting diagnosed later in life with star guards. It’s always very surprising to me because I had always thought it was a juvenile disease. Most of us get affected in our early teens. The genetic testing I did was from the foundation fighting blindness. You could check with them because the test was only $25.
I LOVE your positive attitude and outlook on life !!! I am trying to help my mother adjust to Macular Degeneration she turn 71 on 5/30/20. I have a esight consult planned on 5/28/20. I would like to know what sight aid glasses device worked the best for you. My mother wears glasses. I have watched your reviews on Nusight, Esight but since blind spots are her issue was wondering what aid helped the most in reading. She does have a hand held magnifier up to 200% magnification. She works as a data entry person with a computer so I thought a wearable magnifier would help her in her job. I just do not know which wearable magnifier works the best in blind spots. I'd like her to try more than 1 device if I can obtain them for a test drive. Keep up the GREAT videos !!! I really enjoyed them and plan to send this to my mother in the future as an encouragement to her.
I also used the large print books, attended a school for the blind camps, and I attended a school for the blind after finishing high school to build independent living skills.
HI dude big respect,i Care for my blind mother and at 56 i have cataracts and minus 30 PRESCRIPTION ,, Maybe getting removal of them and not wear thick lensed specs , HAPPY XMAS good luck you are a very sweet guy
Sam, thank you for your story. I can relate to you on many grounds. I was born with congenital cataracts. As the surgery was so primitive in the 60's the doctor felt that I could be fitted for glasses. So at the age of 4 I had my first pair. Experienced the teasing, bullying and yes, the front row guy. In 1990, I developed a detached retina in my good eye. 1994 had cataracts removed. 1997 another detached retina. Then in 1999 my first bout of wet macular degeneration in my good eye. Lost part of my central vision from the laser surgery. Had to retire from a 20 year career. Still having bleeding episodes in my good eye as recently as last month. Have used a Jordy, but no longer effective. Might look into IrisVision.
OMG! Our vision stories are so similar... only my sister didn't get Stargardt's like me, I wasn't a huge fan of the School For The Blind that I went to in Fremont, CA (mostly because a lot of the other students had multiple handicaps and I felt more "mainstream" than my blind peers), and I never attempted to drive any kind of motor vehicle. I TOTALLY had some of the other experiences you mentioned, though! I was diagnosed when I was about 11, as well... at Standford University. When I got to 6th grade, my VH teacher helped to set up a CCTV for me to use, RIGHT in FRONT of the classroom, just over to the right, but still underneath, the chalkboard! I was also given a monocle to try using for a bit and I started to learn braille... I didn't stick with it though... I kept cheating, by looking at the dots. haha Anyway, thanks for sharing your story! I'm happy that you were able to get genetic testing done to confirm your clinical diagnosis! I hope to do the same in the not-so-distant future... although I currently have two young children (a 5 year old and a 1.5 year old), and there's this crazy pandemic happening!!! ...But still, it's exciting to live in this time, with SO MUCH amazing technologies (-Smart phones... am I right?!) and medical advancements!!!
Sam I am wondering how to find out about trade shows. I would love to be able to see/handle all the different devices. I am in the Dallas-Fort Worth Texas area. Thanks for all you do for all us VIPs!
The easiest thing to do would be google assistive technology conferences and conventions. There’s actually a website that has a whole list of them. In FB will be in Las Vegas this July and ACB will be in New York Around the same time. There’s a big one in Anaheim California and another one in Orlando Florida.
I remember the large print books that you're talking about like it was yesterday for me and they didn't really work for me very well at all,but the school kept getting them anyway though and they were also bigger than me because I'm fairly short even to this day,so alot of people would say that it looked like a book walking with arms and legs because you couldn't see anything else,but that they were real happy for me too I wish that I even had the opportunity to go to a school for the blind because I feel that I would've learned alot more then I know now and I was never able to drive either I never had my license my friends never even trust me to get behind the wheel of a vehicle,but I was able to ride a bike though even if I always had to use tires in the back like little kids that are just learning how to ride does because I've also got cerebral palsy too and my balance isn't all that great,but I did the best I could with what I had though.
I have albinism and I get you regarding a condition being part of our identity. Tho maybe your variation is specific to you and your sister. That would be cooler than just being part of one community. I also have an older sister with albinism and I came along, she felt better that she was part of the family. Also very light sensitive, but I do okay inside with low light. My sister was a house mom at the Texas School for the Blind, but neither of us went to one. She got very involved with the NFB, I was only involved a little bit after I applied for some scholarships through them. I like some aspects of community, but some of it I find... stifling.
Thank you Sam.. Sometimes people with LowVision are in a stable mode... And others are in a progressive mode. There are risk factors like being mono ocular and having a cataract in the one good eye that make Cataract Surgery very risky. the latter is where i'm at.. I'm scared of loosing all my sight from another highly risky surgery (with the intent of improvement)... I have a question on opinion.. as my eye sights is progressive and deteriorating, i hesitate to spend $2k on a OrCam READ, when in a year form now, that won't be sufficient to cover my needs.. if this situation, do you recommend the READ or the MyEYE pro so that i don't have to start over and learn a new device when i i progress into blindness. Point, currently, i can see where i'm going, but cannot see any print or things closer that about 5 feet.. very long sighted. .. I don't want to loose the independence i still have by risking a surgery that has a chance of catastrophic outcome. when i could hold on and let things progress naturally. being type 1 diabetic, i would need help reading glucometers, syringes, ingredients list, carbs, I'm leaning towards the MyEye Pro.. any suggestions?
Well, it really depends on how you would use it and what features you need. The Mayeye has extra features that the read does not. Features like facial recognition, color recognition, scene detection, etc. That being said, it’s also important to think about how you’re going to use it. Meaning the way you will use it. The read is handheld while the Mayeye sits on a pair of glasses. I have a video coming out very soon where I talk about all the differences between the two devices, you might find it interesting. Also, one thing to mention, there are talking blood glucometers available now. That might be helpful for you as well.
Thanks Sam! I’m in the UK. I’m 26 and have central vision problems..... am I too old to be diagnosed with Stargardts? I have always had bad vision but I’m finding reading signs, reading in general, recognising faces, really hard
I always thought the star guards was diagnosed when you were a kid but I guess that’s not exactly accurate. I’ve actually heard of people getting diagnosed in their 40s.
Hi Sam, I have an IRD and I understand your comment, putting a pin on SD as your condition. I got through my school days ok but as I’m ageing my condition is worsening as my IRD is progressive also. In my teens, late 80s I was told I had RP, later I was told it ain’t RP and it’s a juvenile form of AMD. Since then I’ve had years of check ups and recently had genetic testing done. I know a person diagnosed with SD and there issues are similar to mine, every way you describe your condition is the same as mine other than mine started in my late teens My genetic results stated that I have a cone rod like dystrophy caused by a fault in my GUCY2D gene. I also have a sister who got the short straw with me and also had the same genetic result. I am now in my early 50s and still have an umbrella term for my IRD “cone rod like dystrophy”
I have PXE (psuedo Xanthoma Elasticum. In my eyes I have angioid streaks which break thru the Bruchs membrane and cause bleeds. This is all VERY new to me. It started in May. So I have only lost vision in my left eye 20/400 right now. Hopefully I will catch my right eye before it starts to occur. (or better yet, not at all) thank you for your videos. Did you find out whether it is Startgardts?
Hey! I just found your vids, they are fabulous! I have Stargardt desease too and I've met a lot of very good Friends with this desease around the world. Actualy, I have to say that this desease have brought me a lot of good things. it would be nice to know more friends with stargardt, Im from México.
Hello Sam, thank you for your story, my dad have Stargardt as well.I have been follow your videos and comments of the devices that work better for you. I will appreciate if you tell me which ones really help you in your daily habits. I know about orcam myeye2. And can you tell me where is the complete medical test that you talk about? Thanks
I’ll have to make an updated video showing all the different things that I use personally. As far as the genetic testing, it was offered by foundation fighting blindness.
Thanks for sharing your story. Can your children get affected from this disese and how do you cope with this. I have a pygmentary syndrom ( a kind of iris flaking and secondary glaucoma (and startig visual impairment) because these flakes clog the drainage system of theexe which increases IOP. My son inherited this condition which was for me a shock even bigger then my diagnose and I blamed myself for passing this gene. I still drive but noticed in the last time that I had to reduce the sped very muchm because sometimes something surprises me unexpectedly e.g. a pedestrian steppin out of a shady place near the road. So it would be intereseted to hear your experience with riding a byke
Stargardt’s is a hereditary disease so there’s always a chance of passing it on. However, it’s a recessive gene so the chances are much less that my partner will have the gene as well. I have a 21-year-old son and a 13-year-old daughter and so far neither of them show any signs of vision impairment. My sister has a 25-year-old son and a 16-year-old son and neither of them are visually impaired either. If one of my kids got the disease I would be upset of course. However, it wouldn’t be the end of the world because at least they would have me to help and guide them along the way. I don’t let it stop me and I wouldn’t let it stop them as well.
@@theblindlife Thank you Sam. I really dont know where you are taking this inner strenght and almost envy you for it :) Keep on going and help us whose optimism is not so high
Hey Sam, I am also a Stargardts sufferer and loved hearing your story! I have a couple of questions though, I found it interesting to hear you also ride bikes! Can your still ride a bike or moped? I have ridden bikes all my life, but never been able to get a license with my 6/60 vision, but I'm getting to a point where I don't see cars and traffic so well and am thinking one day I'll have to stop if my vision gets worse. Also I wanted to ask - how do you deal with looking people in the eye? I'm 22 now and while it wasn't an issue when I was younger (my vision deteriorated age 8 so I adapted to looking off to one side straight away) since I was about 17 people start to call me out on not looking at hem. Over the last couple of years I've developed the skill of focusing my blind spot on someone's face so they see I'm looking at hem , but then I can't see if they are looking at me or if they make gestures so then I look away and they think I'm ignoring them!
I still ride bicycles but mainly just in my neighborhood where I am familiar with where everything is. I rely on listening for oncoming cars. Everything else you said is exactly the same for me. I can’t look people in the eyes so I do the I am at my central vision right at their face trick as well. Then every now and then, usually when I’m talking, I will glance to the side to make sure they are still looking at me and re-orientate my gaze. I do that trick with random people that I meet throughout the day. People that I will never run into again, like someone taking my order at a restaurant. If I meet someone important though, I will usually let them know that I can’t see and that’s why I can’t look at their eyes. Sometimes it’s awkward but honesty is always the best.
Thank god im not alone I have stargardts too and all the teachers put me in the front of the class but the front row is still far enough back that I can’t read the board
Hello, I wanted to ask about the levels of blindness. I know of someone who markets himself as blind but is actually visually impaired. The public percieves him as totally blind and he is capitalizing on it. He is out there skateboarding and thru his body movements you can tell he is reacting with sight. Would you consider this partially fraudulent?
That’s difficult to say, truly. Many people with low vision, myself included, often refer to ourselves as being “blind “. This can cause some confusion with the general public who don’t realize that blindness is a spectrum, and believe that if A person calls them self blind, then they think that must mean they can’t see at all. The problem is that if this person is deceiving the public and purposefully saying they can’t see anything at all, Then that definitely is not right. I as a visually impaired person would be very disappointed in someone like that.
Check out one of my more recent videos where I talk about getting my test results. The testing was done through the foundation fighting blindness and offered by my local eye doctor.
At the age of 29, I was diagnosed with exactly the same as you had over the years. However, things progressively got worse, and at the age of 52, I was told I had central Areolar Choroidal dystrophy. I live in the United Kingdom, and I was fortunate enough to enrol in a genetic testing programme carried out by the NHS. And I had my Whole Genome mapped as I also have a neurological condition. They logical thought they may be interlinked. As it turns out, I do not have any defective genes whatsoever and clearly is not linked to my neurological condition. I am registered legally blind, and they have absolutely no answers as to why I have what I have. Still, apparently, it is a dominant male disease, or so I'm told. Like you, the area in my macula progressively got larger. That is when they told me that I had CACD, so for nearly 23 years, I thought I had the same disease in my eyes as you had. Still, as it turned out, I didn''just like you. I have an extremely positive outlook. It doesn't bother me in the slightest, and I'll manage very well. Take care, Sam. You are an inspiration.
@@aubshine532 bro I'm not a channel I'm just a fellow viewer and I'll claim to know everything about retinal Pigmentosa butts mine's degenerative Lee progressively better word deteriorating so right now my sight is like look at 3 to soda straws if you have site but if you don't I guess like looking through a monocular eventually I will be completely blind thanks for subbing though I guess no but really I'm not a channel it's just up to the guy wear in the Chant of like blank a billion
jack visio oh I didn’t realize I subbed whoops... but isn’t it where you start losing perefrial vision then it starts working towards the center? I don’t have it so I’m not sure...
It’s interesting how strgardts have different affects each person different. My sister and I are the same way with being diagnosed. I was about 8 when I was first diagnosed and I didn’t really understand much of what it meant then but my sister was diagnosed at 8 as well and I’m four years older then she is, and it affects us both different. She’s a lot more sensitive to light and I have more color deficiency issues and ifordeu eye as well somehow, but we both have horrible depth perception issues. And OMG I HATE THOSEYEXTBOOKS. I have an iPad with books on there but it doesn’t always have it on there so sometimes I have to have those huge books but my teachers are really nice about it and let me keep them in the classrooms cuz I ain’t carrying those damn things around. A huge high school everyday. I’m at about 20/200 at q5 right now and it doesn’t cause much problem with anything I do, except reading the board but it’s also nice we have the technology now tone bale to do those things more easily. The people I knew were always really nice to me and I was never bullied for anything like that and a lot of people helped me when I asked which makes me feel a lot better because I used to be really conscious of that and I’m not so much anymore but I was always a little nervous to ask about those sorts of things. Personally I’m a relatively quiet kid as it is so I definitely tend to keep mgimparwmeng to myself except when I need to say something about it or if someone asks. Honestly I’m just happy that I could and still can do all the things I normally do like I’m really big in swimming and I love drawing so much and I rwwlt don’t want to give that up and I don’t think it will come to that but it still means a ton to me . It’s also really nice that someone else I finally found has stargardts as well because all my life it’s just been me and my little sister with it. I also have a boyfriend now and he always says he doesn’t even notice that I’m visually impaired most of the time because if you looked at me you wouldn’t be able to tell, which makes sense because, I don’t really act like it unless I need to. Sorry if there’s a lotta typos, I did this really quick and sloppy o sorry
Hi Sam I name is Deborah Burger and I was diagnosed with macular did generation at 19 and I work at an elementary school kids just a teachers assistant but it breaks my heart every day that I can’t see their faces as they get older and the school and they waved to me or they say how is Burger and I can’t see what kid it is and they don’t understand but I can’t see their face so I just wanted to tell you that and I’m waiting commission for the blind gave me a TV screen in the classroom that I can zoom in on their faces in the classroom
Your story was so familiar to me. I was diagnosed with Stargardt's at 10 and remember the diagnostic tests, the large print textbooks, and always sitting on the front row, sometimes in a desk pushed closer to the board. I also had the experience of a retinal specialist (the same specialist who diagnosed me 40 years earlier) telling me that the progress of the disease didn't look like Stargardt's, so perhaps I was misdiagnosed as a child. As in your situation, a genetic test confirmed it was Stargardt's. Thank you for this. I know you posted it some time ago but I just heard it today on your podcast.
Yes, very similar experiences ! I'm glad you enjoyed the video and podcast!
Thanks Sam. I also have Stargardts. I was an exception to the normal course as I had 20/20 vision until I was in my mid 60's. I was able to practice law in a courtroom for years. Now I have all the characteristic limitations. Reading print and seeing facial features of people are the most significant. I use computer software called ZoomText and all sorts of adaptive equipment to allow me to keep doing office work at 73. I consider myself extremely fortunate.
I hope we get superadvancement in bionic eye so you can get better vision than 20/20.
We tend to take eyesight for granted until we have problems. I have had 5 retina detachments, I have scleral buckles on both eyes. Cataract surgery in both eyes & multiple laser and cryotherapy's.I have developed advanced glaucoma in both eyes from all the trauma from the surgery's.I think that's it but I'm starting to lose track, Oh yea I have diplopia too. LOL I can actually see pretty well out of one eye considering, I have a fantastic retina specialist he saved my vision many times! I'm having optic nerve trouble now, my glaucoma is starting to win the battle just in the last few months. I'm afraid I'm headed for the dark room soon. I'm probably one detachment away from it anyways. But I have prepaired myself mentally for this final chapter in my life, even tho it's hard not to be a little afraid of whats to come. I find your content very informative & interesting. Thanks for posting sir.
Thanks so much for your video. My son was diagnosed with this condition during the 3rd grade, I felt guilty and devastated. Now my son is 27 graduating in this month with his bachelors degree and will start as a teacher next year teaching children with vision problems. Thanks you!!!
That’s truly awesome! Please tell him I said congratulations and he should be proud of that achievement! Always happy to hear about people thriving with vision impairment!
The Blind Life I will tell him for sure. His major is in philosophy and will be graduating with honors. God bless you!!!
I thought you had stargardts. I have the same and you seened to act in the ways I do. It sucks but you certainly have made the best of it.
Sam thanks for sharing. I can relate as I was born with high myopia which then progressed to myopic macular degeneration about 18 years ago. Your TH-cam videos are undoubtedly the best videos on TH-cam for our community. Keep up the good work.
That’s very kind of you to say, thank you!
I am an ophthalmologist, and your videos help me understand and explain low vision and ways to copy with it
That’s great, I’m glad that you’re finding it helpful!
I WENT THROUGH THE SAME THINGS! BEING AS CLOSE AS POSSIBLE TO THE BLACK BOARD WAS PART OF MY LIFE.
Thank you for your channel Sam, Andre has introduced you to me with our shared emails as I am in online college at Southern New Hampshire University at 52 years old and was diagnosed with stargardt's at 14. I was legally blind by 16 but graduated high school and went on to beauty school and became a hairstylist for 30 plus years. The struggle is real but I never let it stop me. I'm currently halfway through my degree at snhu in business administration. They are working on the setup that you have to enable me to get work done faster and get through with les struggle. You inspire many, keep rocking the Stargardt's and blind life! 😁💪🏻👍🏻🥰
Catherine Myrga
Owenton Ky
I love your story Sam. Im proud of you.
Sam, I can so relate to your confusing diagnosis. I was diagnosed with macular did generation around 20 years old and felt that was in accurate. So later after further testing was diagnosed with retinitis pigmentosa. They have constantly run a visual field test saying that my peripheral vision should be shrinking and over and over I have explained that my peripheral vision is perfectly fine!
So, had my genetic testing done a couple of months ago and still waiting for results. I have a visual acuity of 20/500 corrected, nystagmus, photophobia, and loss of color vision. I also have one blind spot in my right eye. It’s frustrating to just not know! Thank you so much for sharing your story love your channel.
Wow, that is frustrating! Good luck on the results!
Thank you so much for all your helpful videos, they are really useful but also and probably most importantly, very encouraging, I have damage to the retina on both eyes and have lost almost all the vision in my left eye and the peripheral vision in my right eye due to a combination of type 1 diabetes and epilepsy, your story and your videos have got me to begin using a cane which is very helpful and also just been very positive and again very encouraging, thanks again and God bless you. Joe
Thank you for sharing this Sam. I think I would feel the same way if a doctor told me I didn't have Stargardts after all :) But I hope (and I know you do) that you know that you are far more than Stargardts. You are an incredible ambassador for people with vision loss across all spectrums. I share your videos with everyone that needs a boost or knowledge. I have watched every video you have loaded. Binging the first bunch in 3 days to catch up. It has been so valuable to find someone who can articulate the many complexities of vision loss in such a positive light :) Much love to you always
Thank you very much!
I love your positivity! God bless you!
Nice, thanks for sharing Sam
Thanks for sharing this Sam. I had my left eye shot out when I was 13 and now at 50 my right eye is going wonky. I appreciate all that you do here.
It’s my pleasure!
Hey Sam, great video! It was fun listening to this one on more of a serious note and getting to know more about you and your vision loss. Awesome video! Thanks again, Matt
Thanks Matt!
thanks for that Sam, I enjoyed watching/;listening to your story. I have learned so much from your channel in my short vision loss Journey (Just since June 2018 - when I down and fed up about it, I( come on TH-cam and watch channels like and including yours..I may even do my own vid haha
Also fl41 tint glasses really help my light sensitivity
Omg my beautiful brother i would absolutely love if you would put together a video of the tricks and hacks that you did/do to get around seeing things as a visually impaired person that would be an awesome valuable video 😁
I’ve been there, sharing your same journey
I really appreciate your video, it was so awesome
Do they on 43 2400 in both eyes, and I still drive my bicycle live alone and have my own business
As you say I love to be like this, I do not imagine my life without it
Thank you for sharing
Mine is Congenital Cataracts. I see about 20/80 in my good eye and 20/300 in my bad eye with a 15% peripheral. Like your eye condition, mine is also hereditary My grandmother, mom, me, and my two siblings have it. I see the best out of all of us.
Thankfully I've never had to lug around massive big print books, but the braille books my best friend lugged around was MASSIVE!!!!!
Also, I never was made to sit up next to the board. I had a monocular I used to read the board, or I recorded the class. I did also get bullied, in fact, so severely it almost lead to suicide. My mom then pulled me out of that school. After that, everything was much better.
And yes, I've driven several times (not legally of course). I also ride a bike.
Thank you Sam for sharing your story and it inspires me as a blind person and I love watching your videos especially for the blind
Thank you
THANK YOU SOOOOOO MUCH FOR THIS VIDEO!! I was born with eye muscle issues and my left eye was always lazy and later down my eyesight journey…I was diagnosed with Keratoconus at my mid 20’s and 4 years agoI had my corned transplant and actually got 2 shots of Covid and it has made my vision much worse and I will see my eye specialist next month and want to know where my vision stands for now and what my future for my vision holds for me…^____^Thank you!!^____^
Sam, you are the man! I have watched you for awhile now and I like your videos. They put a true explanation to others from the VIP point of view. I am from a family of 8 children and 4 of us are are visually impaired. Two, including myself, sre legally blind. As you state, it is an adjustment, but once you accept, you control the power over the disease. Your videos are informative to the VIP plight but also demonstrate useful products that can help in daily life. I appreciate what you do and thank you for it. I wish you much success in getting a little financial success with what you are doing going forward. You keep making videos and I will keep watching and spreading the word about them.
Awesome, thank you very much!
Excellent video. I have only just found your channel I’m trying to learn voiceover which I’m finding very challenging.
You can do it!
Thanks so much for your story. I have lost my vision due to multiple sclerosis.
Thanku sam
I’m a patient of nystagmus and seriously it did happen to me as well n still facing these problems
Thank you so much for your video may b it can motivate me too❤️
Hello, you're amazing story is also my own story, I love stargard's disease... Thanks to it I'm who I am today...
Bro I just found this video on your channel and let me tell you I totally understand what you went through my friend God bless you and your family play
sam, just found this channel and it is amazing! I was diagnosed with RP over 15 years ago at the age of 14. Can relate so much to your storeu of school and the Uno comment made me laugh outloud. I have never been involed with the VI comunity but am trying to start now.
Hey Sam, glad I came across your channel today. I too am a “proud Stargardtian” if you will. I’m almost 27 now, I was diagnosed when I was 3. School was tough, really tough. Here in India we aren’t equipped with the kind of facilities like big-printed textbooks so I would just stick my neck right into the book. Obviously the other kids would find that hilarious. But I came out of it a much stronger individual and was able to manage through college and emerged out of it successful. I even played on the school and college football (soccer) teams. I now work and I can drive wearing corrective lenses, but I avoid high speeds and night driving. I love reading (God bless the Kindle with its zoom feature) and hope to write a novel some day. (As if that wasn’t hard enough with normal vision, eh?) So on the whole I lead a pretty normal life. One issue I do face is eye fatigue. After long stretches of reading or looking at my phone I feel like my eyes just ran a marathon and need a break. Is that common?
Thank you for sharing your story, very inspiring! Yes, eyestrain is very common with our condition!
Hey shoaib. Could you elaborate about the lens. Cause one of my brother also suffers from stargardts. We’re from india.
I also have Stargardts. Went through, and continue to go through similar things as far as school, doctors, ect. My least favorite eye test is the ERG. 😱
Hi like your channel. We met at a1touch ccc I was told I had Stargardt‘s too, then out of no where they said maybe RP. I was blown away.
Starguardian! Thats awesome! 😎 Great video!
HI SAM.
THANKS FOR SHARING. IT IS GOOD TO HEAR YOUR STORY AND TO GET TO KNOW YOU A LITTLE BETTER. HOPE YOU AND YOUR FAMILY ARE DOING WELL. TAKE CARE MY FRIEND. UNTIL WE SEE YOU IN THE NEXT AWESOME VIDEO!!!
Thanks man! BTW, you have one of the coolest TH-cam names!
THANKS SAM!!!
Myself and my younger sister have stargarts.
Then you’re part of the coolest club around!
Thanks for sharing your story Sam. I will be interested to hear more about the genetic testing that you had done. I look forward to hearing more about that and where genetic testing can be done. I appreciate your channel and I've learned a great deal from your videos.
Hi from Turkey Sam! You're really great person and I'd like to meet you. My brother got Stargardt disease but he isn't as strong as you. So I'm proud of you. Always be strong and positive to life 💕
Thank you Sam for your video(s) I came across today. You are so amazing with such a great attitude. I was glad to hear about the Orcam device, DNA testing, other helps for "low vision". It seems the vision field continues to expand and grow with new conditions, treatments and prognosis. Your an inspiration. God bless you! I've subscribed to your channel and look forward to your further posts.
Thank you so much, and welcome to the family!
My mom who has Stargardt's got diagnosed in college. She had a car and license. I used to have dreams where I had to help her drive from the backseat. Voluntarily gave up her license (there's no regular testing in the US it seems)
I remember in third grade I used to stand over the projector to copy notes and I used to write on the lines
Ty for sharing. I can relate.
Thank you for sharing! Newby here recently diagnosed with AMD, I’m 51, and curious as to how my fellow AMDers live independently ♥️😉
There’s a great support website that you may want to check out. Maculardegeneration.net
Hey Sam, I am from North Carolina. I went to that same summer program back in 1978. That lets you know just how old I am. Back then it was held in Butner. My vision was 20/200 back then, but I was not brave enough to ride a moped in the big city.
That’s awesome!
All the very best Thank you very much 🤗 for bringing us this content it’s very educational for me
Your video s are great ... in 2006 I had a extreme allergic reaction to medication - Steven Johnson syndrome / TENS was basically burned from the inside out .. like I was in a fire ... my issue cornea issue in the shape and scarring of my eyeball I have one eye that works the sea with and one hide a day evenly scarred that’s like looking out a frosted bathroom window so I do to have low vision so I find your channel informative and helpful ... we all just try to get through and continue on the road of life thanks man !
It’s my pleasure, and thank you for sharing your story
Thank you for sharing this Sam! Could you make a part 2 with a continuation of what happened after you finished your education? I was really getting drawn in and then was like "and then what happened"? Like when an interesting book gets abruptly cut off
LOL sorry about that! I’ve already told a lot of that story in my couples Q&A series with my wife. In the meantime, you could check that out.
Im sure that if Sam makes an audiobook it will be the bestseller on Amazon!
Hey Sam, I too have Stargardts I think but I don't let it define me. According to Juliet "A rose by any other name would smell as sweet" Perhaps we could get a T-shirt emblazoned with the strap line "I have Stargardts but I don't. # it's complicated"
I know Sam said there is a hole to put the lanyard. I found the hole, but not quite sure how to put the lanyard in the hole to keep the clam shell from coming out. I guess I need a tutorial on lanyard insertion. Any suggestions. Maybe Sam can include that in his next video. Amy suggestions. Thanks.
I was diagnosed by one Dr that says I have Ocular Toxoplasmosis. 2 other doctors disagree but can't diagnose mr so I just with the ocular toxo diagnoses as for the reason I'm losing my vision
Hey Sam love the video. I'm about 5 years older than you so I can relate to your struggles in school man!
Also that would be awesome if you did a live stream with your buddy about your, "Born to be wild" days. I would definitely tune in for that!
All right perfect, I’ll see what I can do about that lifestream!
Great Story! My Brother and I same thing.....Achromatopsia. You cracked me up about School......you cannot hide it. I forgot about those goddamn volume books too! Blindsports like Goalball and Technology saved me. I have worked in Tech for the VA for almost 25 years. Love your channel......
Yes, I played goal ball at the school for the blind and it was awesome! Love that sport!
Thanks for your contributions to ou lives. The svhool sounds great but I am an adult newlyweds blind and I am having trouble finding a short live in profram to teach me how to maintain my independence as I intend on o move into a new place-alone or with a roommate. Except I am challenged so drastically. Can you point me in some direction for Santa Cruz Ca?
Hello Sam , it's my first time watching you , thank u for ur video , I have stargardt disease , am from Egypt even doctors here don't know alote about this disease , am really afraid and disappointed
Thanks for sharing Sam. I have RP (retinitis pigmentosa). Keep up the awesome job you do.
Mine is 20/200 in my good eye I have light vision in my other eye I have a cane but have trouble getting training
I was diagnosed at seven, my brother also has stark arts, I’m 46 now he’s 43. We ran into some doctors who thought it wasn’t Stargard, but it is, some doctors just don’t know what they’re looking at for sure.
The largest print text books! Thise were a lot to carry!!!😅 please do a driving tips and hacks video! Does your sister drive scooters/mopeds too? If I didnt live in a city with heavy traffic, I would think about getting a scooter
I have macular degeneration that I was diagnosed with at age 79 and I feel sorry for myself🤨your an inspiration
Try eating blueberries on regular basis and real saffron 30 mg a day and keep me posted
thanks for this Sam. Im still not 100% quite sure what i have, although i have been informed it is Stargardt's (late onset??) I am 47, was diagnosed at 45. I have not yet come across anyone with late onset Stargardt's, perhaps if anyone is out there you can reply inline with this comment. I am yet to have the genetic test done, in SA this is very expensive, however have had an angiogram done with by Opthalmologist, and the results show pigmentation behind the macular, and a bulls eye formation. Im clearly still in early stages, but was wondering if anyone knew a rough estimate timeline from been diagnosed to been diagnosed as legally blind. I can still drive, although not very well at night time. since Feb of this year, i have noticed my left eye has developed a blur, it is so irritating, I keep thinking my glasses have a smudge. So yes, is there anyone out there that was diagnosed with Stargardt's later in life, please give me a shout!
I have heard of others getting diagnosed later in life with star guards. It’s always very surprising to me because I had always thought it was a juvenile disease. Most of us get affected in our early teens. The genetic testing I did was from the foundation fighting blindness. You could check with them because the test was only $25.
I LOVE your positive attitude and outlook on life !!!
I am trying to help my mother adjust to Macular Degeneration she turn 71 on 5/30/20. I have a esight consult planned on 5/28/20. I would like to know what sight aid glasses device worked the best for you. My mother wears glasses. I have watched your reviews on Nusight, Esight but since blind spots are her issue was wondering what aid helped the most in reading. She does have a hand held magnifier up to 200% magnification. She works as a data entry person with a computer so I thought a wearable magnifier would help her in her job. I just do not know which wearable magnifier works the best in blind spots. I'd like her to try more than 1 device if I can obtain them for a test drive. Keep up the GREAT videos !!! I really enjoyed them and plan to send this to my mother in the future as an encouragement to her.
I also used the large print books, attended a school for the blind camps, and I attended a school for the blind after finishing high school to build independent living skills.
You are lucky you had good vision during child years. You developed normally, hit every milestone. You are brave.
The part of your story with the grant book sounds like the struggles that I had to go through too.
HI dude big respect,i Care for my blind mother and at 56 i have cataracts and minus 30 PRESCRIPTION ,, Maybe getting removal of them and not wear thick lensed specs , HAPPY XMAS good luck you are a very sweet guy
Thank you!
Thanks for sharing your story Sam.
Sam, thank you for your story. I can relate to you on many grounds. I was born with congenital cataracts. As the surgery was so primitive in the 60's the doctor felt that I could be fitted for glasses. So at the age of 4 I had my first pair. Experienced the teasing, bullying and yes, the front row guy. In 1990, I developed a detached retina in my good eye. 1994 had cataracts removed. 1997 another detached retina. Then in 1999 my first bout of wet macular degeneration in my good eye. Lost part of my central vision from the laser surgery. Had to retire from a 20 year career. Still having bleeding episodes in my good eye as recently as last month. Have used a Jordy, but no longer effective. Might look into IrisVision.
Thanks for sharing your story
I really enjoy your channel.
OMG! Our vision stories are so similar... only my sister didn't get Stargardt's like me, I wasn't a huge fan of the School For The Blind that I went to in Fremont, CA (mostly because a lot of the other students had multiple handicaps and I felt more "mainstream" than my blind peers), and I never attempted to drive any kind of motor vehicle. I TOTALLY had some of the other experiences you mentioned, though!
I was diagnosed when I was about 11, as well... at Standford University. When I got to 6th grade, my VH teacher helped to set up a CCTV for me to use, RIGHT in FRONT of the classroom, just over to the right, but still underneath, the chalkboard! I was also given a monocle to try using for a bit and I started to learn braille... I didn't stick with it though... I kept cheating, by looking at the dots. haha
Anyway, thanks for sharing your story! I'm happy that you were able to get genetic testing done to confirm your clinical diagnosis! I hope to do the same in the not-so-distant future... although I currently have two young children (a 5 year old and a 1.5 year old), and there's this crazy pandemic happening!!! ...But still, it's exciting to live in this time, with SO MUCH amazing technologies (-Smart phones... am I right?!) and medical advancements!!!
That’s awesome, thanks for sharing your story as well! Yes, it truly is the best time in history to live with a vision impairment!
Sam I am wondering how to find out about trade shows. I would love to be able to see/handle all the different devices. I am in the Dallas-Fort Worth Texas area. Thanks for all you do for all us VIPs!
The easiest thing to do would be google assistive technology conferences and conventions. There’s actually a website that has a whole list of them. In FB will be in Las Vegas this July and ACB will be in New York Around the same time. There’s a big one in Anaheim California and another one in Orlando Florida.
I remember the large print books that you're talking about like it was yesterday for me and they didn't really work for me very well at all,but the school kept getting them anyway though and they were also bigger than me because I'm fairly short even to this day,so alot of people would say that it looked like a book walking with arms and legs because you couldn't see anything else,but that they were real happy for me too I wish that I even had the opportunity to go to a school for the blind because I feel that I would've learned alot more then I know now and I was never able to drive either I never had my license my friends never even trust me to get behind the wheel of a vehicle,but I was able to ride a bike though even if I always had to use tires in the back like little kids that are just learning how to ride does because I've also got cerebral palsy too and my balance isn't all that great,but I did the best I could with what I had though.
I have albinism and I get you regarding a condition being part of our identity. Tho maybe your variation is specific to you and your sister. That would be cooler than just being part of one community. I also have an older sister with albinism and I came along, she felt better that she was part of the family. Also very light sensitive, but I do okay inside with low light. My sister was a house mom at the Texas School for the Blind, but neither of us went to one. She got very involved with the NFB, I was only involved a little bit after I applied for some scholarships through them. I like some aspects of community, but some of it I find... stifling.
Thank you Sam.. Sometimes people with LowVision are in a stable mode... And others are in a progressive mode. There are risk factors like being mono ocular and having a cataract in the one good eye that make Cataract Surgery very risky. the latter is where i'm at.. I'm scared of loosing all my sight from another highly risky surgery (with the intent of improvement)...
I have a question on opinion.. as my eye sights is progressive and deteriorating, i hesitate to spend $2k on a OrCam READ, when in a year form now, that won't be sufficient to cover my needs.. if this situation, do you recommend the READ or the MyEYE pro so that i don't have to start over and learn a new device when i i progress into blindness. Point, currently, i can see where i'm going, but cannot see any print or things closer that about 5 feet.. very long sighted. .. I don't want to loose the independence i still have by risking a surgery that has a chance of catastrophic outcome. when i could hold on and let things progress naturally.
being type 1 diabetic, i would need help reading glucometers, syringes, ingredients list, carbs, I'm leaning towards the MyEye Pro.. any suggestions?
Well, it really depends on how you would use it and what features you need. The Mayeye has extra features that the read does not. Features like facial recognition, color recognition, scene detection, etc. That being said, it’s also important to think about how you’re going to use it. Meaning the way you will use it. The read is handheld while the Mayeye sits on a pair of glasses. I have a video coming out very soon where I talk about all the differences between the two devices, you might find it interesting. Also, one thing to mention, there are talking blood glucometers available now. That might be helpful for you as well.
Thanks Sam! I’m in the UK. I’m 26 and have central vision problems..... am I too old to be diagnosed with Stargardts? I have always had bad vision but I’m finding reading signs, reading in general, recognising faces, really hard
I always thought the star guards was diagnosed when you were a kid but I guess that’s not exactly accurate. I’ve actually heard of people getting diagnosed in their 40s.
Hi Sam, I have an IRD and I understand your comment, putting a pin on SD as your condition. I got through my school days ok but as I’m ageing my condition is worsening as my IRD is progressive also. In my teens, late 80s I was told I had RP, later I was told it ain’t RP and it’s a juvenile form of AMD. Since then I’ve had years of check ups and recently had genetic testing done.
I know a person diagnosed with SD and there issues are similar to mine, every way you describe your condition is the same as mine other than mine started in my late teens
My genetic results stated that I have a cone rod like dystrophy caused by a fault in my GUCY2D gene. I also have a sister who got the short straw with me and also had the same genetic result. I am now in my early 50s and still have an umbrella term for my IRD “cone rod like dystrophy”
Love from India
Man I remember those days:)
Hi
I ordered this about 2 weeks ago, can you give me an updated as to when it will be delivered. Thanks
Not sure what you’re talking about, sorry
Inspiring!
I also have an a story related to my blind life....but I don't think ever about it becouse it was too hard to remember all the shit.
Sam, so the doctor that said it wasn't stargardt's. What did he say it could be if it's not stargardt's?
He wasn’t sure, that’s why he wanted me to get further testing. BTW, great TH-cam name!
@@theblindlife thank you and good luck! Knowing is so important. Not knowing drives me crazy!
I have PXE (psuedo Xanthoma Elasticum. In my eyes I have angioid streaks which break thru the Bruchs membrane and cause bleeds. This is all VERY new to me. It started in May. So I have only lost vision in my left eye 20/400 right now. Hopefully I will catch my right eye before it starts to occur. (or better yet, not at all) thank you for your videos. Did you find out whether it is Startgardts?
Actually that video is coming out next!
Hey! I just found your vids, they are fabulous! I have Stargardt desease too and I've met a lot of very good Friends with this desease around the world. Actualy, I have to say that this desease have brought me a lot of good things. it would be nice to know more friends with stargardt, Im from México.
That’s fantastic, welcome to the channel! You should check out groups on Facebook. There are lots of Stargardt‘s groups.
Hello Sam, thank you for your story, my dad have Stargardt as well.I have been follow your videos and comments of the devices that work better for you. I will appreciate if you tell me which ones really help you in your daily habits. I know about orcam myeye2. And can you tell me where is the complete medical test that you talk about? Thanks
I’ll have to make an updated video showing all the different things that I use personally. As far as the genetic testing, it was offered by foundation fighting blindness.
Thanks for sharing your story. Can your children get affected from this disese and how do you cope with this. I have a pygmentary syndrom ( a kind of iris flaking and secondary glaucoma (and startig visual impairment) because these flakes clog the drainage system of theexe which increases IOP. My son inherited this condition which was for me a shock even bigger then my diagnose and I blamed myself for passing this gene. I still drive but noticed in the last time that I had to reduce the sped very muchm because sometimes something surprises me unexpectedly e.g. a pedestrian steppin out of a shady place near the road. So it would be intereseted to hear your experience with riding a byke
Stargardt’s is a hereditary disease so there’s always a chance of passing it on. However, it’s a recessive gene so the chances are much less that my partner will have the gene as well. I have a 21-year-old son and a 13-year-old daughter and so far neither of them show any signs of vision impairment. My sister has a 25-year-old son and a 16-year-old son and neither of them are visually impaired either. If one of my kids got the disease I would be upset of course. However, it wouldn’t be the end of the world because at least they would have me to help and guide them along the way. I don’t let it stop me and I wouldn’t let it stop them as well.
@@theblindlife Thank you Sam. I really dont know where you are taking this inner strenght and almost envy you for it :) Keep on going and help us whose optimism is not so high
Hey Sam, I am also a Stargardts sufferer and loved hearing your story! I have a couple of questions though, I found it interesting to hear you also ride bikes! Can your still ride a bike or moped? I have ridden bikes all my life, but never been able to get a license with my 6/60 vision, but I'm getting to a point where I don't see cars and traffic so well and am thinking one day I'll have to stop if my vision gets worse. Also I wanted to ask - how do you deal with looking people in the eye? I'm 22 now and while it wasn't an issue when I was younger (my vision deteriorated age 8 so I adapted to looking off to one side straight away) since I was about 17 people start to call me out on not looking at hem. Over the last couple of years I've developed the skill of focusing my blind spot on someone's face so they see I'm looking at hem , but then I can't see if they are looking at me or if they make gestures so then I look away and they think I'm ignoring them!
I still ride bicycles but mainly just in my neighborhood where I am familiar with where everything is. I rely on listening for oncoming cars. Everything else you said is exactly the same for me. I can’t look people in the eyes so I do the I am at my central vision right at their face trick as well. Then every now and then, usually when I’m talking, I will glance to the side to make sure they are still looking at me and re-orientate my gaze. I do that trick with random people that I meet throughout the day. People that I will never run into again, like someone taking my order at a restaurant. If I meet someone important though, I will usually let them know that I can’t see and that’s why I can’t look at their eyes. Sometimes it’s awkward but honesty is always the best.
Thank god im not alone
I have stargardts too and all the teachers put me in the front of the class but the front row is still far enough back that I can’t read the board
I know, it was like, this is the best we can do but it’s still not good enough!
Thank you for your insights and sharing Sam, I think you are a force for good and courageous.
Thank you very much!
Hello, I wanted to ask about the levels of blindness. I know of someone who markets himself as blind but is actually visually impaired. The public percieves him as totally blind and he is capitalizing on it. He is out there skateboarding and thru his body movements you can tell he is reacting with sight. Would you consider this partially fraudulent?
That’s difficult to say, truly. Many people with low vision, myself included, often refer to ourselves as being “blind “. This can cause some confusion with the general public who don’t realize that blindness is a spectrum, and believe that if A person calls them self blind, then they think that must mean they can’t see at all. The problem is that if this person is deceiving the public and purposefully saying they can’t see anything at all, Then that definitely is not right. I as a visually impaired person would be very disappointed in someone like that.
Please feel free to email me if you would like to discuss this further.
Do you have any idea about OR CAM. I am totally blind, will it help me ?
Yes, I’ve done several videos on or cam.
Sam, do you know of two brothers on youtube who have Starguards? Their channel is called Two Blind Brothers.
Yes, last October I went to New York and made a couple videos with them. Really cool guys!
Where did you get that complete test for all genes?
Check out one of my more recent videos where I talk about getting my test results. The testing was done through the foundation fighting blindness and offered by my local eye doctor.
At the age of 29, I was diagnosed with exactly the same as you had over the years. However, things progressively got worse, and at the age of 52, I was told I had central Areolar Choroidal dystrophy. I live in the United Kingdom, and I was fortunate enough to enrol in a genetic testing programme carried out by the NHS. And I had my Whole Genome mapped as I also have a neurological condition. They logical thought they may be interlinked. As it turns out, I do not have any defective genes whatsoever and clearly is not linked to my neurological condition. I am registered legally blind, and they have absolutely no answers as to why I have what I have. Still, apparently, it is a dominant male disease, or so I'm told.
Like you, the area in my macula progressively got larger. That is when they told me that I had CACD, so for nearly 23 years, I thought I had the same disease in my eyes as you had. Still, as it turned out, I didn''just like you. I have an extremely positive outlook. It doesn't bother me in the slightest, and I'll manage very well. Take care, Sam. You are an inspiration.
Let me tell you this
*I have LHON since i was 16*
It SUCKS
But the handicap is fun
I'm on the road to complete my University Grad.
That’s excellent, congratulations!
Hay Bro I got RP AKA retina Pigmentosa and I just found your Channel I guess what you got the new sub
jack visio isn’t RP like the dead opposite of macular degeneration?
@@aubshine532 bro I'm not a channel I'm just a fellow viewer and I'll claim to know everything about retinal Pigmentosa butts mine's degenerative Lee progressively better word deteriorating so right now my sight is like look at 3 to soda straws if you have site but if you don't I guess like looking through a monocular eventually I will be completely blind thanks for subbing though I guess no but really I'm not a channel it's just up to the guy wear in the Chant of like blank a billion
jack visio oh I didn’t realize I subbed whoops... but isn’t it where you start losing perefrial vision then it starts working towards the center? I don’t have it so I’m not sure...
What do have?
jack visio I have the same as stargardts disease
It’s interesting how strgardts have different affects each person different. My sister and I are the same way with being diagnosed. I was about 8 when I was first diagnosed and I didn’t really understand much of what it meant then but my sister was diagnosed at 8 as well and I’m four years older then she is, and it affects us both different. She’s a lot more sensitive to light and I have more color deficiency issues and ifordeu eye as well somehow, but we both have horrible depth perception issues. And OMG I HATE THOSEYEXTBOOKS. I have an iPad with books on there but it doesn’t always have it on there so sometimes I have to have those huge books but my teachers are really nice about it and let me keep them in the classrooms cuz I ain’t carrying those damn things around. A huge high school everyday. I’m at about 20/200 at q5 right now and it doesn’t cause much problem with anything I do, except reading the board but it’s also nice we have the technology now tone bale to do those things more easily. The people I knew were always really nice to me and I was never bullied for anything like that and a lot of people helped me when I asked which makes me feel a lot better because I used to be really conscious of that and I’m not so much anymore but I was always a little nervous to ask about those sorts of things. Personally I’m a relatively quiet kid as it is so I definitely tend to keep mgimparwmeng to myself except when I need to say something about it or if someone asks. Honestly I’m just happy that I could and still can do all the things I normally do like I’m really big in swimming and I love drawing so much and I rwwlt don’t want to give that up and I don’t think it will come to that but it still means a ton to me . It’s also really nice that someone else I finally found has stargardts as well because all my life it’s just been me and my little sister with it. I also have a boyfriend now and he always says he doesn’t even notice that I’m visually impaired most of the time because if you looked at me you wouldn’t be able to tell, which makes sense because, I don’t really act like it unless I need to.
Sorry if there’s a lotta typos, I did this really quick and sloppy o sorry
That was awesome, thank you for sharing your vision story as well! Yeah, carrying those books around was a nightmare, LOL!
You got the results back? And?
Hi Sam I name is Deborah Burger and I was diagnosed with macular did generation at 19 and I work at an elementary school kids just a teachers assistant but it breaks my heart every day that I can’t see their faces as they get older and the school and they waved to me or they say how is Burger and I can’t see what kid it is and they don’t understand but I can’t see their face so I just wanted to tell you that and I’m waiting commission for the blind gave me a TV screen in the classroom that I can zoom in on their faces in the classroom
That’s great!
Where are you Sam you haven’t downloaded videos these months
I put out a video every single Saturday. You may not be getting notifications of my videos. I would recommend going to my channel directly