I'm a sighted person but I can really relate to you. I'm 28 now and was recently diagnosed with a rare connective tissue disease that's slowly taking away my independence. I can no longer drive and I spend most of my life in a bed at this point so it can be really frustrating at times but finding ladies like yourself on the internet has really helped me feel not so alone and like there are others out there who understand, even if we aren't going through exactly the same struggles. Hang tough girl! You are one of my many inspirations on here and I dunno what I'd do without people like you!
You are so strong! Reading your message fills me with so much joy and appreciation for life. I always tell myself on hard days that God/life made us strong enough to deal with these difficult diseases that would destroy the spirits of others if they lived our lives. Keep being a beautiful, powerful person!
I just want to say thank you! You are such a strong person. A month ago I was officially diagnosed with Stargardt's and it progressed so fast over this past month that I have had to stop driving and working. It has been hard to try to adjust to but taking it day by day is the best way. I'm 22 so I have a long life ahead of me. It's good to know someone else understands my point of view. Thank you!!
+Tré Monét Yes stay positive. You do have your whole life ahead of you. Sorry about the progression and not being able to drive I know the feeling. Stress less. In my experience my worst declines were when I'm stress which in turn, stresses me out more! That's my best advice to ya. You can msg or email me if anything.
The final statements in this video were especially powerful!! I have Retinitis Pigmentosa, which is also a degenerative retinal disease. I have never been able to see in dim lighting or experienced having peripheral vision, or at least not much. My last eye exam revealed I have about 1 degree of vision, in comparison to over 170 degrees of vision, which is what you should have. My vision is 20/50 with glasses in one eye and 20/60 in the other. I lack depth perception and cannot see contrast. Of course, I use a white cane. I mean, I don't have usable vision that I can use practically. Like you said, people don't understand vision loss, especially progressive vision loss that affects young people(I'm 16-years-old). Raising awareness for visual impairments is extremely important!!
Hey! Firstly, you write really well for a 16 year old! 😃. Did not expect that when I got to the bottom of your comment. I have four participants in my support group that have RP and they've shared the same thing - fully sighted people don't get that we can see but can't see at the same time. I'm glad my words reached you and we will spread word about life as partially sighted people,
Super great video, thanks for sharing! Very impressed that you know and can’t explain our disease Stargardt, 60, Stargardt Macular Dystrophy… named for the German ophthalmologist Karl Stargardt Who first studied this disease. I was diagnosed at 19, my 20s were difficult for sure. Your story sounded so familiar! in my late 30s, in 1991, I started a Stargardt foundation in Chicago with Help from Dr. Gerald Fishman, a specialist in inherited retinal diseases. Our first conference had 65 people in the room with. stargardt. almost all had never met one other person before! Lots of tears and hugs! It helped me so much to be with others. I coordinated the foundation for 12 years with over 2000 Stargardt members. The foundation was acquired by. A larger foundation called the Foundation Fighting Blindness. Those days were so important for all of us! Keep telling your story, and giving special hope to so many! Warmest regards, Tom Perski.
Thanks for sharing your story as well. There are quite a few parallels . Hope you are managing as best as you can. Luckily we have more things to help than we did in the early 90's
thank you for sharing your story. I know it gets rough but you are strong and you are moving forward.I have been totally blind for 30 years and I still struggle at times. Your videos are great keep up the good work!
I just discovered your videos through a friend on Facebook. I was diagnosed with Stargardt’s two years ago and it has been such a struggle. Thank you so much for sharing your story. It not only is important to spread awareness of what is is like for partially sighted people, but is is also comforting to hear someone else who understands the experiences that I am currently going through. I have plenty of support from family and friends, but they don’t truly understand. At times, Stargardt’s can feel very isolating.
I’m glad you found my channel and it helps. It can be very isolating which is why I make videos like these. It’s great you have family and friends tos uplift you and now you can relate to me and others in the comment section with the same disease 💛
You are very courageous ! You are right , no one understands what the disease is like unless they were diagnosed with it. I was diagnosed with Stargardt's Disease when I was 25, in college and married. (20 years ago ) It is a daily struggle but you keep moving forward and do your best in life. GOD BLESS YOU!
+Tisha Holliman Thank you 💛. So nice to hear from someone who has a little more experience with t Han me. I really appreciate your words and honest!!! It really is. Struggle but we struggle gracefully ⭐️
I went through your same journey, it was very difficult when I was a teenager of course going to college and finding a job I thought it was somebody elses problem, after one day I realize it was totally part of my personality, now I’m 43 years old legally blind and have achieve all my goals Of course with a lot of support of my family and with a lot of courage Keep on, love your videos Best greetings from Ecuador South America👋
Think it’s awesome you’ve achieved so much I hope you continue to do all that you desire. It’s great that you have a support network makes a big difference.
Yessssss!!! Although I do not have your eye disease, I have several and am also legally blind. I definitely understand wanting to be normal and still be a diva. I take great pains concerning my appearance. If you think looking like a diva without a cane or a guide dog is a problem, try being a diva with a white cane. You get stupid comments like-but you don't look blind or you're so pretty to be blind. Really!!! Depending on the day, my answer in my head is-it's just the cane stupid. You don't have to talk louder, slower, or dumb down the conversation. So glad I found your channel, which gives me encouragement to continue being a diva who is legally blind/visually impaired. I know this was recorded two years ago and I don't expect a reply, but it did feel good to get it off of my chest and to know there is someone else who can relate to me. Stay diva licious and I hope that you continue to keep your positive attitude. I know you don't want to use a white cane or a guide dog and that reading is important to you; however, think about audiobooks-they are awesome and you won't strain your eyes trying to read from the peripheral part of your vision. Just a suggestion and it's something I had to learn the hard way. Also, as you lose your vision, you'll need to develop your listening and hearing in order to navigate the world because you can no longer rely on your sight. Peace
+Kim Stanley YES MY DIVA. Be proud of who you are. Girls in my blind youth group have gotten that stupid prey/blind comment too it's so frustrating. But work your cane girl! If it helps you stay independent and you make IT look good all the power to you 🙂
Hi. I enjoyed your video and wish you much joy in the future. I have had Stardargt's for 54 years on (I had it earlier, but it was finally detected when I was 21). Lucky for me, I was in the Air Force when it was detected, so I ended up getting a college education from the VA and guesswhat? My major was Accounting and I had a career in the accounting and budget fields, but only because new technology came around the time I could no longer read by hand-held magnifiers. I thank the IT gods for CCTV's, ZoomText, the iPhone, etc. I am retired now, but I reaised a lovely family and have dealt with my vision loss without pitying myself and just did what I had to do. Given your great personality and "spunk" (I love spundk), I know you will be very successful in life. Good luck..
Thanks and thanks for sharing I think it's so neat that you were in the Air Force!!!!! Yeah, I've tried using zoomtext too, not a fan. I'm happy you've got a loving supportive family, it makes all of the difference.
I’m literally crying just thinking how you were bullied. I used to get a lot of bullying so this stuff gets to me. I hate how people are always making fun of others without knowing what people are going through. Even if you can control something, doesn’t make it ok for people to bully you :’(
You are a gifted speaker and I'm sure you are helping many people with your candid honesty. Blessings to you and all that struggle with judgements and ignorance of any kind.
I have Stargardt's too. I can understand how hard it is, and that you can feel a bit lost sometimes. It's so cool that you've created your community and talk about it. I was diagnosed when I was 8 and am now 25. I don't like to tell people about it (and that's probably why I got good at hiding it and living an almost normal life) But anyway I like to hear others talking about their story. I'm all the way in France and got to hear it, and I think that is pretty awesome 😄 (also it's weird that we both studied nutrition)
+Nina Loizeau hey bonus I think it's cool more than weird that we both have the same undergrad. Sending love to you 💕 most ppl I know with our disease hide it too. pretty neat that you like in France!
Hi Alisha, Thank you so much for sharing! I have 4 adult children and all 3 of my daughters (not my son) have Stargardt's disease. Fortunately, they were able to get enough accommodations to get through college and get degrees, but finding employment is still very difficult. I feel your pain. Please know that I will be keeping you in my prayers right along with my daughters! (ages 27, 26, 24) Again, thank you!!
+Valerie Hawkins Thank you so much for saying that. I've been praying a lot more lately for the same reason - finding a job while living with Stargardt's disease is hard. All of your daughters are around my age so I'm sure they understand that an eye disease AND being a millennial makes it harder. I hope that good things come to all three of them. Sending my love to you and your family. Thanks again for sharing!
i loved your video. i have coloboma of the irus and optic disc, i have been blind in one eye since birth and very low vision in the other eye. people don't understand my vision impairment, which makes me very frustrated, watching your video has helped me. can't wait to see more!!
Omg. This comment made my day!!! So so happy my content has helped ya. My cousin has coloboma. My auntie was Oslo worried about it when she was born but she's a toddler now and completely healed. Appreciate you sharing your condition with me. Yes life is harder for us but we go through it with so much grace and gratitude for what we have xx
Alicia Wow, your approach and attitude toward your condition is amazing. You are so positive it’s incredible.. I messaged u recently and explained my condition. I have RP and have gone most of my life without any problems besides night blindness.until recently. Over the past 6 months my condition has worsened and o have just recently given up driving. I find your approach and attitude so inspiring.I hope I get my arms around my condition with the same positive ness that you have! Thanks Lenny
Thank you for sharing your story. I do have Stargatdts and just by hearing your story made me feel better. Finally somebody who is going through the same thing as I am that can understand.
I was diagnosed with a vision disease called Dominant Optic Atrophy in 5th grade. i am also colorblind. Normal People just don’t understand what it like for visually impaired people. Since I have a vision disease, I have to have a vision teacher that meets with me every week. I was given an iPad Pro that I was able to connect to the teacher’s laptop through an app called Join.Me. So whatever is on the board like notes or a worksheet or just something important that I had to write down, it showed up on my iPad. Using the iPad in school has improved my grades so much. I am very happy that they have devices and other things that help visually impaired students. As I get older, I know that my vision will never get better and will only get worse, i am very scared to lose my independence and the way I used to look at the quality of life. Thank you so much for sharing your story. It is a great thing to know that there are people who understand what i go through every day.
I got cancer and went to immediate menopause right after surgery/ chemo. I totally understand u. I admire how u can tell ur history so gracefully without crying. I pray for God to give you the strength and happiness u deserve. Don't lose faith. Science is giving enormous steps. Keep praying never give up. Send u much love and healing thoughts
I am so glad I found your channel. My son was diagnosed with Best's disease. It's a very rare form of macular degeneration. He's 6. Thank you for sharing your story. Definitely a new subby. God bless.
God bless you and your son! It's so rare, I just tried to google it and no searches came up. I'll pray that this disease builds resilience and character in your son as he's going to live a life that very few will comprehend. I've been down quite a bit over that last 6 years over my macular degeneration but I have also realized without it, I wouldn't be as resourceful, compassionate or have a voice to be honest without it. So I'm eager for you to see how amazing your son will grow up to be with or in the absence of treatment for Best's Disease. Take care and thank you
my family has the same genetic disease which affects me ,my brother ,and my cousin. but i find it ironic how life takes away its gifts from people who use them the most unlike those who waste away their life.i cant lie ,this slightly angers me but i remember that we have to be happy which cures my anger and i accept life.
Thank you for sharing your story & explaining how you live. You are truly an inspirational, beautiful strong woman. I love your channel - keep it up & stay strong!
I’m 27 and in the last year I’ve gone from 20/20 to 20/300 and had genetic testing and got diagnosed with stargard. It was extremely frustrating at first but it has gotten better over time.
thankyou for this. Some times I feel soo hopeless. I look at people who dont have to deal with what I am and het envious. but I really needed to hear this Thankyou. were all going to be just fine. keep faith in God.
+Janea Tucker yeah, it's extremely hard comparing yourself to others who can see what the average person can see but know you are still capable, you're still great and you're still awesome regardless of your condition
You are such a beautiful lady. So sorry, but people don't understand things they haven't personally ecperienced. Just realize that what doesn't break us makes us stronger. You are strong.
Hello, I think your videos are very encouraging. I can tell you have the issue not by your video itself, but, by the specific advice and tips you give. Especially about vitamin A. So, the negative comments are very obtuse and should be ignored. I have to deal with this every day by people who doubt me. I just feel so sad for people who make comments that are baseless and unfounded. I think your advice is so specific and well-researched that you obviously know how this visual impairment affects yourself and others. Keep going strong and remember that you inspire others to do the same.
+Venu Varanasi thank you so much! Yeah I wanted to be well versed in my disease and my background in nutrition leads a Hana's in me understand things like how vitamin A works for the eyes. People don't know when they judge and they jut talk. It's sad really
hi my name is Bella and im a junior in high school and im going tough a similar struggle, i was diagnosed with the same diagnosis at the age of 11 and i totally relate to everything you said except im arid im going to fail high school because i cant bring myself to face how serious this condition really is.
I had perfect eyesight. At age 10 I couldn't see clearly vision was blurry. I have being wearing glasses first 7 years. 17 now I have high myopia in my right eye. My vision gets worse very year and It should stop as the body stops growing. Usually age 18 or 25. Still everyday I fear of going blind. You are very strong.
Hey Someone (cool name lol) It's very hard what you're going through, I've read up on Myopia and it's so hard dealing with something that's always getting worse. Know that part of being strong is knowing where you're at with things meaning you're strong too. It's an unfortunate path you and i are on but we can make it beautiful if we effort it.
I love you and your videos because you are so relatable. I have RP and it is a struggle trying to explain myself to people. the only thing I kind of had an issue with is your statement about being against canes and guide dogs and stuff. I started using a cane about 2 years ago and it was very difficult for me because of my pride and stuff. but it is very useful and not just a portrayal of blindness by the media. I totally get if u don't need it because u can manage but some of us need it and hearing a statement like that may sound discouraging. no hate I swear I just felt like I needed to point this out since using a cane was a very hard decision for me to make and if I could make it easier for others to make that decision then I want to do everything in my power to.
+Daniella Salvatore I understand and apologies for coming off as negative with regards to the white cane. I have a lot of resistance to it for many reasons. One of them being at this time it doesn't work for me and I have a strong desire for something that can help with focus and detail. My friends with RP love their canes and dogs but our visual needs are different. I'm grateful that I have my apple products to help me out day to day. I have hope that something will be created soon though! Best of luck to ya and happy the cane helps you get around.
I just got the call today that I have the ABCA 4 gene. I am part of a natural history study at the National Institutes of Health in the USA. It's hard. I am 20/60 in the left and 20/80 in the right corrected since I am also nearsighted and have astigmatism. I'm 37, a little older than average at diagnosis. Have you had an ERG yet? I've had 2 and they suuuuuuck. So disorienting. Anyway, good to see someone thriving with this disease.
Yes I've had allllllll the tests lol. Hope you don't have to do them often. Some people get diagnosed in their 40's when their gene 'switches' on so it's not unheard of. Hope yours stabilizes and doesn't progress and glasses continue to help. Take care
Hi, My best friend Shelley is legally blind since birth and nobody else in her family has her condition. She to uses special equipment, occasionally the cane,for outside she wears special sunglasses. However, she's slowly losing the sight she has left in both eyes and she's scared, and concern because her husband also has health issues himself and despite her blindness she has always been very independent but afraid she'll lose all of that if she completely loses her sight. Her husband takes her everywhere, to work, shopping, appointments, to visit family and friends. It's amazing how she maneuvers around when she's not using the cane, but as her friend I worry about how she'll get around especially at home once her sight is completely gone and her state of mind. . .will her depression get worse.
Well to start your friend sounds like an incredibly strong and brave individual. It's natural to feel depressed or lost while losing vision but it's a choice to use it to lift you up and create the life you want in spite of it. I hope your friend fights for happiness and independence and finds new ways to do old things. Sending love and blessings her way.
Oh my gosh I feel you girl on the bright light I go to the eye doctor every six months and I have a retina detachment so they use that same light it is so annoying and after it the little bit of vision that I have does not work for a good hour or so. lol blind girl problems
Hi. Thanks for your honesty. I’m not a 20 something hot chick, I’m a 54 year old Irish man and I can totally identify with you. I’m only getting to the point of respecting myself and not feeling shame about my vision. Thanks again
hey Pat thanks for sharing. Self acceptance is a continuum sometimes you will more than other times but at least you have the awareness to shed the shame and continue on the journey
Girlfriend! -Your ability to convey info and capture an audience is remarkable!!! :D I look forward to watching more of your videos! I have 20/200 (right) - 20/400 (left) as well, but I was diagnosed with this eye acuity around the age of 10/11 years old... so I guess I've had a little longer to adjust (-though it still SUCKS sometimes!) ;-P I recently had a baby and the 2 hardest things about parenting -for me- are not being able to see my baby's face when he isn't right up in front of me and not being able to just pick up books to read to him! :( It was a long time ago that I still had "good vision", but one clear memory I have was being able to see the definition of the shape of the moon, I used to tell my parents that I liked the "fingernail" or "sliver" moon the best. :) Now I can only see it when I look through binoculars. Looking forward to more of your videos! :) peace
+Mo Bra Oh wow it's so crazy that you wrote that! I told my boyfriend two weeks ago that I miss seeing the man in the moon and he said 'isn't it supposed to be a rabbit or mushu?' LOL Whatever it is I can't see anymore and it bums me out. So I completely feel ya on that. I think that incredible that you still were brave enough to have a baby. Motherhood is hard enough but being blind on top of that? 👏🏾👏🏾👏🏾 Hope they'll be something one day so you can see his face clearly 💙
Hey Barbara that's one of the trickiest parts - people not understanding hopefully you'll meet more people in your ocmmunity that can relate and you have the blind fam on here too. It really makes a difference when you can relate
I am 51 and was recently diagnosed with iritis which is inflammation of the eye. I was told by specialist that the inflammation is caused due to something else in my body it's been about 2 months now which treatment steroid eye drops and it hasn't been any Improvement and my vision in my left eye seems to be getting worse to where everything is blurry. Sorry I just had to vent it's really frustrating not knowing what's causing the inflammation in my eye and and being told by one of the doctor that he's really worried about my eye and not being able to see well out of my left eye it's extremely frustrating and worrisome smh
Targaryen understand is very very very frustrating specially when you try to explain that somebody in one thing I can say is nobody can understand until unless they've had the really walk in those shoes so I understand exactly what you're saying and I hope things are going well and and in a little bit better for you but I've had stargardt's disease since I was born so I definitely understand and good luck to you
TFS yes it is frustrating and can be hard to put into words how we feel about our lived experience. Yet, we still do it! it's a funny situation to be in
@@alishainc for replying back to me yeah I'm just trying to do the best I can and hope you try to do the best we can with the with the vision that you do have and you know just go from there I see you are hard-working woman just like I'm a hard-working individual myself hard-working man so you know I definitely understand
The “telescope” is called a monocular. They are actually quite useful for some people. I have 2 of them. I’m legally blind, and am 20/200 with correction in one eye and 20/300 in the other. I don’t typically correct though. I find glasses distracting and I can’t wear contacts because I have nystagmus (involuntary eye movement).
Star's Adventures thanks for sharing the name. At the time my vision was around 20/40. It didn’t do anything for me. I’m past 20/400 in both eyes doubt it would be useful to me now anyway. Sorry to hear glasses are distracting
Alisha's Guide I mostly use my monocular for reading menus and whiteboards. If I go to a play or some other type of stage show I use it for that as well. I do use glasses for watching movies. They are useful for that type of thing. :)
I love thisssss❤️ I’m also legally blind! Your so inspiring. I have Retinal Vasculitis. I will be posting a story time about me going blind as well soon 🤗
hey love I've never heard of that disease sorry you're been diagnosed happy we can relate even if it's not in the best of circumstances. Message me when you post it xx
+Danielle Bee Thanks I already raised funds through go fund me. I may do another once we clearly map out where every single cent will Be delegated to 🙂
I have start ridge as well although mine has gotten badd I'm Twenny. 600 plus.. The family still don't seem to get it. As there are times I need their help and they just walk off.. I'm to the point now looking into getting a guide dog as I wanna be independent and save with my travel. Just found something called the or Cam my eyes Which will attach to the sight of a pair of glasses fairly small and read for me. It can also recognize faces and stop lights. Like having a pair of eyes that top to you that are not your own. There was only 10 when my vision went to legal blindness. However I did find it interesting about the vitamin a as no one has ever brought that up to me before.
Alisha's Guide Many won't understand this disease, but instead throw a million questions first, but hey you're right, some doors close, but others will open. Thank you ! (:
Omg can i meet you are the first Canadian person on you tube that has the same disease then me..... I'm 35 I and I just got my final diagnosis (last Thursday) my ABCA4 gene is also wrong. I'm from Montreal. I also made videos about my disease but they are in french
+Sophie en famille Hey!!!! If you're ever in Toronto during the FFB event we have to meet up! I wish I were still fluent in French but I'm so happy that you too make videos on this content 😘
I am 20/200 and 20/400 and going blind myself. but luckily my glasses luckily help me be able to drive but I am going blind in my central vision and right now only my right eye has lost all central vision. They told me my left eye will go but don't know when.
+Focus Nails sorry to hea. At some point many ppl with stargardt’s like myself don’t wear gkssses because they don’t wirk st all. If you stay strong and positive you can manage regardless
The last time I went to the eye doctor my experience was similar. The bright light in my eyes... he kept it in my eyes for a torturous amount of time! Then said he saw something like a mole looking thingy... I should go see a specialist... I don't have money though. No Stargardt's yet anyway lOl
dear,pls let me know why not u trying the nano-grade drop by loratis?my 7 years kids also with stargaurdt,pls suggest me.......im from bangladesh...thanks
Hi Alisha.Great video and thank you.I found out that I have startgardt disease.I don't know to much about Startgardt disease.Do you can write to me,what I can expect of Startgardt?I never be comlitly blind?Now I am so terrible and bored and confused,I know that I must go forward but it isn't easy,you undesratnd me.Thank you Alisha!I hope that I will never be blind.All the best.
Hey Miso =) You will never be completely blind luckily! My doctors have said that it vaires for each person but funnily enough my two IRL friends with Stargardt's are both black ladies with a weaker left eye. I've been connecting with people all over the world of different ages and genders who have some things in common but like anything else have different experiences. I still work as do some people with the disease but some people have reached the stage where they are no longer comfortable or can no longer do the work. I have two other Stargardt's related videos on here you can check the links in the info box. And of course if you have any vision questions email me or dm on my Facebook page. Take care!
I really can see. I think I have glaucoma but I can't make eye contact either people tell me look,at me I say I am but I can't see you so. So yeah its hard.
hey Jane yup I go through that too. I worry sometimes that people think I'm rude or deceitful because I don't make or hold direct eye contact. I try not to get in my head too much.
I have lots of advice lol but I’d like to know what you want advice on. My general advice would be to stress less and stay positive but if you have a specific concern you can ask here or DM if you want to keep it private
hello there I'm Sam thanks for sharing I've heard of this eye condition but never been too familiar with it I am visually impaired myself however I don't have stargardt's disease I'm just totally blind in my right eye I have glaucoma which is taken about more than half of my peripheral vision the little telescope that you mentioned I actually use something similar to that it's calling monocular I use that for reading overhead menus in restaurants I sometimes need help using those new soda machines with the touch screens cuz some of them the fonts are too small I'm not able to read standard newsprint everything I r Reid has to be under high magnification this comment is being made through voice recognition on my phone being visually impaired does have its frustrating moments I too cannot drive at least you had a driver's license I never even got the chance I've been visually impaired practically all my life I also have congenital nystagmus which is movement of the eyes that affects my depth perception doesn't allow me to focus clearly. I've never used a white cane myself either cuz I really don't need one to get around but I have thought about starting to use something that they call an ID cane it is like a smaller Slimmer version of the white cane it is only used to tell people that you are visually impaired I would mostly need to use it when Crossing busy intersections most of my life I didn't want anyone to know that I was visually impaired either I also tried to hide it even through school now I'm at the point in my life 48 years old not really care anymore what anybody thinks it's better that they know that not know that I don't see well.
+bluetech7753 Thanks for sharing. Yes, I'm very grateful that I had 20/20 until I was 19 and that I still have vision now. It's hard for all of us whether low vision, legally blind or blind. We jus gotta keep our heads up take cate
Hey I’m looking through videos to help me get though this time right now. I’m having serious problems with my vision and I’m scared of losing it. I went to an optometrist a few days ago and got my eyes dilated and checked the doctor said everything looks good that all I have is ocular migraines and I’m not convinced everyday it seems my vision is slowing messing up. I’m really scared of going blind and need support or help. Any tips ? If you can, can I add you on Instagram or Snapchat to talk to you. I feel so left alone
Hi thanks for trusting me to share your story. I t doesn’t sound like you have stargardts so I’m not sure how your vision will progress. I know it can be isolating going through anything where you don’t know anyone else who is loving the same thing. My only advice from what you’ve told me is to find a professional who can work though your anxiety with you. Adam, I feel terrible that the optometrist doesn’t have a clear cut answer for you. You might need to reach out for some resource to cope with these feeling especially if this progressing fast.
Hi Alisha!My girlfrind has Strtgardt disease!Today,I speak with girlfriend about startgrdt and I'm here for her,but I heard that Startgrdt lead to complitly blind,but she tell that strtgrdt dont lead to complitly blind..What is true?I hope that medicine in next few yers will be devoloped and find cure for disease.But for example,if they can't find cure she dosen't be blind for example in 50-yers ,when she be older...How is your.boyfriens reacted on this...I love she but I worry...If she will be completly blind,do I can accept this,I am so confused😑Sorry on my English and my bad grmmary,all the best😀
Hi! Luckily Stargardt's Disease does not cause complete blindness. Instead most people become legally blind (like me) where most or all of your central vision (Macular) has deteriorated. It's scary because it's fdifferent for everyone, some people lose a little and it stabilizes and they never lose more, some people lose a lot or are like me and lose rapidly over a period of time. Some people even lose most at a younger age. So it's depends on your girlfriend As for my boyfriend, honestly he's been more accepting about it than I have. He's very helpful , beyond understanding and seriously always willing to do things like read out entire menus or forms. Hope that helps. Take care
I'm a sighted person but I can really relate to you. I'm 28 now and was recently diagnosed with a rare connective tissue disease that's slowly taking away my independence. I can no longer drive and I spend most of my life in a bed at this point so it can be really frustrating at times but finding ladies like yourself on the internet has really helped me feel not so alone and like there are others out there who understand, even if we aren't going through exactly the same struggles. Hang tough girl! You are one of my many inspirations on here and I dunno what I'd do without people like you!
You are so strong! Reading your message fills me with so much joy and appreciation for life. I always tell myself on hard days that God/life made us strong enough to deal with these difficult diseases that would destroy the spirits of others if they lived our lives. Keep being a beautiful, powerful person!
Callie Parker is it Edlhers danlos syndrome? Stay strong
Stem cell research or therapy may be able to help or esight
I just want to say thank you! You are such a strong person. A month ago I was officially diagnosed with Stargardt's and it progressed so fast over this past month that I have had to stop driving and working. It has been hard to try to adjust to but taking it day by day is the best way. I'm 22 so I have a long life ahead of me. It's good to know someone else understands my point of view. Thank you!!
+Tré Monét Yes stay positive. You do have your whole life ahead of you. Sorry about the progression and not being able to drive I know the feeling. Stress less. In my experience my worst declines were when I'm stress which in turn, stresses me out more! That's my best advice to ya. You can msg or email me if anything.
The final statements in this video were especially powerful!! I have Retinitis Pigmentosa, which is also a degenerative retinal disease. I have never been able to see in dim lighting or experienced having peripheral vision, or at least not much. My last eye exam revealed I have about 1 degree of vision, in comparison to over 170 degrees of vision, which is what you should have. My vision is 20/50 with glasses in one eye and 20/60 in the other. I lack depth perception and cannot see contrast. Of course, I use a white cane. I mean, I don't have usable vision that I can use practically. Like you said, people don't understand vision loss, especially progressive vision loss that affects young people(I'm 16-years-old). Raising awareness for visual impairments is extremely important!!
Hey! Firstly, you write really well for a 16 year old! 😃. Did not expect that when I got to the bottom of your comment. I have four participants in my support group that have RP and they've shared the same thing - fully sighted people don't get that we can see but can't see at the same time. I'm glad my words reached you and we will spread word about life as partially sighted people,
I also have RP it is very hard to explain to ppl
I’m crying bc someone understands how I feel and I’ve felt so isolated in my feelings.
Super great video, thanks for sharing! Very impressed that you know and can’t explain our disease Stargardt, 60, Stargardt Macular Dystrophy… named for the German ophthalmologist Karl Stargardt Who first studied this disease.
I was diagnosed at 19, my 20s were difficult for sure. Your story sounded so familiar! in my late 30s, in 1991, I started a Stargardt foundation in Chicago with Help from Dr. Gerald Fishman, a specialist in inherited retinal diseases. Our first conference had 65 people in the room with.
stargardt. almost all had never met one other person before! Lots of tears and hugs! It helped me so much to be with others. I coordinated the foundation for 12 years with over 2000 Stargardt members. The foundation was acquired by. A larger foundation called the Foundation Fighting Blindness. Those days were so important for all of us! Keep telling your story, and giving special hope to so many! Warmest regards, Tom Perski.
Thanks for sharing your story as well. There are quite a few parallels . Hope you are managing as best as you can. Luckily we have more things to help than we did in the early 90's
Thank you so much for sharing your story! You literally told my story. I’m so proud of you! Thank you for sharing your story! Awesome video!
thank you for sharing your story. I know it gets rough but you are strong and you are moving forward.I have been totally blind for 30 years and I still struggle at times. Your videos are great keep up the good work!
+My Blind Mamas Messy Kitchen thank you for your support it really means a lot to me. Especially today 🙂
I just discovered your videos through a friend on Facebook. I was diagnosed with Stargardt’s two years ago and it has been such a struggle. Thank you so much for sharing your story. It not only is important to spread awareness of what is is like for partially sighted people, but is is also comforting to hear someone else who understands the experiences that I am currently going through. I have plenty of support from family and friends, but they don’t truly understand. At times, Stargardt’s can feel very isolating.
I’m glad you found my channel and it helps. It can be very isolating which is why I make videos like these. It’s great you have family and friends tos uplift you and now you can relate to me and others in the comment section with the same disease 💛
You are very courageous ! You are right , no one understands what the disease is like unless they were diagnosed with it. I was diagnosed with Stargardt's Disease when I was 25, in college and married. (20 years ago ) It is a daily struggle but you keep moving forward and do your best in life. GOD BLESS YOU!
+Tisha Holliman Thank you 💛. So nice to hear from someone who has a little more experience with t Han me. I really appreciate your words and honest!!! It really is. Struggle but we struggle gracefully ⭐️
thank you for sharing your story, your strength is inspiring 💜
Thanks Natasha✌️🏾🙂
I went through your same journey, it was very difficult when I was a teenager of course going to college and finding a job
I thought it was somebody elses problem, after one day I realize it was totally part of my personality, now I’m 43 years old legally blind and have achieve all my goals
Of course with a lot of support of my family and with a lot of courage
Keep on, love your videos
Best greetings from Ecuador South America👋
Think it’s awesome you’ve achieved so much I hope you continue to do all that you desire. It’s great that you have a support network makes a big difference.
You have such a beautiful spirit. I know that your testimony and courage will help a lot of people, sending love, light and prayer. 💜
Thanks I'm hoping so!
I am so glad i found you. I honestly felt like i was the only one who felt this way. Thank you for sharing 💓
Would've never known . Watched this all the way until the end :)
Thanks it means a lot that you stuck it out til the end xx
AshleyrCoello
Yessssss!!! Although I do not have your eye disease, I have several and am also legally blind. I definitely understand wanting to be normal and still be a diva. I take great pains concerning my appearance. If you think looking like a diva without a cane or a guide dog is a problem, try being a diva with a white cane. You get stupid comments like-but you don't look blind or you're so pretty to be blind. Really!!! Depending on the day, my answer in my head is-it's just the cane stupid. You don't have to talk louder, slower, or dumb down the conversation. So glad I found your channel, which gives me encouragement to continue being a diva who is legally blind/visually impaired. I know this was recorded two years ago and I don't expect a reply, but it did feel good to get it off of my chest and to know there is someone else who can relate to me. Stay diva licious and I hope that you continue to keep your positive attitude. I know you don't want to use a white cane or a guide dog and that reading is important to you; however, think about audiobooks-they are awesome and you won't strain your eyes trying to read from the peripheral part of your vision. Just a suggestion and it's something I had to learn the hard way. Also, as you lose your vision, you'll need to develop your listening and hearing in order to navigate the world because you can no longer rely on your sight. Peace
+Kim Stanley YES MY DIVA. Be proud of who you are. Girls in my blind youth group have gotten that stupid prey/blind comment too it's so frustrating. But work your cane girl! If it helps you stay independent and you make IT look good all the power to you 🙂
Alisha's Guide so surprised that you answered but pleased. Thank you for the positive encouragement. Us (blind) girls got to stick together. LOL
Alisha's Guide Thanks Diva for the encouragement!! 👠👠
Hi. I enjoyed your video and wish you much joy in the future. I have had Stardargt's for 54 years on (I had it earlier, but it was finally detected when I was 21). Lucky for me, I was in the Air Force when it was detected, so I ended up getting a college education from the VA and guesswhat? My major was Accounting and I had a career in the accounting and budget fields, but only because new technology came around the time I could no longer read by hand-held magnifiers. I thank the IT gods for CCTV's, ZoomText, the iPhone, etc. I am retired now, but I reaised a lovely family and have dealt with my vision loss without pitying myself and just did what I had to do. Given your great personality and "spunk" (I love spundk), I know you will be very successful in life. Good luck..
Thanks and thanks for sharing I think it's so neat that you were in the Air Force!!!!! Yeah, I've tried using zoomtext too, not a fan. I'm happy you've got a loving supportive family, it makes all of the difference.
Thanks for sharing a part of you with the world! You are such a beautiful and strong person inside and out!! Keep Shining!!!! 🌞
+Dornalee Browne Thanks cousin!
I’m literally crying just thinking how you were bullied. I used to get a lot of bullying so this stuff gets to me. I hate how people are always making fun of others without knowing what people are going through. Even if you can control something, doesn’t make it ok for people to bully you :’(
Very true. On the bright side it made me stronger.
So strong and beautiful! Your story is so touching! Blessings love!
Thank you 💓 thanks for the blessings
You are a gifted speaker and I'm sure you are helping many people with your candid honesty. Blessings to you and all that struggle with judgements and ignorance of any kind.
Thank you. Much appreciated.
Thanks for sharing because things out of your control are really difficult for people to understand.
no problem! it is really hard to put into words. I hope you continue to vocalize your experiences
I have Stargardt's too. I can understand how hard it is, and that you can feel a bit lost sometimes. It's so cool that you've created your community and talk about it. I was diagnosed when I was 8 and am now 25. I don't like to tell people about it (and that's probably why I got good at hiding it and living an almost normal life) But anyway I like to hear others talking about their story. I'm all the way in France and got to hear it, and I think that is pretty awesome 😄 (also it's weird that we both studied nutrition)
+Nina Loizeau hey bonus I think it's cool more than weird that we both have the same undergrad. Sending love to you 💕 most ppl I know with our disease hide it too. pretty neat that you like in France!
Wow, you are really Awesome!! I love your straightforward honesty. You have so much charisma!!
thanks so much 💗
Hi Alisha,
Thank you so much for sharing! I have 4 adult children and all 3 of my daughters (not my son) have Stargardt's disease. Fortunately, they were able to get enough accommodations to get through college and get degrees, but finding employment is still very difficult. I feel your pain. Please know that I will be keeping you in my prayers right along with my daughters! (ages 27, 26, 24) Again, thank you!!
+Valerie Hawkins Thank you so much for saying that. I've been praying a lot more lately for the same reason - finding a job while living with Stargardt's disease is hard. All of your daughters are around my age so I'm sure they understand that an eye disease AND being a millennial makes it harder. I hope that good things come to all three of them. Sending my love to you and your family. Thanks again for sharing!
i loved your video. i have coloboma of the irus and optic disc, i have been blind in one eye since birth and very low vision in the other eye. people don't understand my vision impairment, which makes me very frustrated, watching your video has helped me. can't wait to see more!!
Omg. This comment made my day!!! So so happy my content has helped ya. My cousin has coloboma. My auntie was Oslo worried about it when she was born but she's a toddler now and completely healed. Appreciate you sharing your condition with me. Yes life is harder for us but we go through it with so much grace and gratitude for what we have xx
Sadly I’m 13 and I’m slowly losing my vision I’m getting scared so I’m listing to good stories to calm down
Sorry to hear love, it's a scary time but it's not impossible to find your way and happiness with your life.
Alicia
Wow, your approach and attitude toward your condition is amazing. You are so positive it’s incredible..
I messaged u recently and explained my condition. I have RP and have gone most of my life without any problems besides night blindness.until recently. Over the past 6 months my condition has worsened and o have just recently given up driving.
I find your approach and attitude so inspiring.I hope I get my arms around my condition with the same positive ness that you have!
Thanks
Lenny
Thanks love. It's a practice you'll get the hang of it and it's not easy trust me I know 😉😉
Thank you for sharing your story. I do have Stargatdts and just by hearing your story made me feel better. Finally somebody who is going through the same thing as I am that can understand.
I was diagnosed with a vision disease called Dominant Optic Atrophy in 5th grade. i am also colorblind. Normal People just don’t understand what it like for visually impaired people. Since I have a vision disease, I have to have a vision teacher that meets with me every week. I was given an iPad Pro that I was able to connect to the teacher’s laptop through an app called Join.Me. So whatever is on the board like notes or a worksheet or just something important that I had to write down, it showed up on my iPad. Using the iPad in school has improved my grades so much. I am very happy that they have devices and other things that help visually impaired students. As I get older, I know that my vision will never get better and will only get worse, i am very scared to lose my independence and the way I used to look at the quality of life. Thank you so much for sharing your story. It is a great thing to know that there are people who understand what i go through every day.
TFS and happy the iPad has been able to help you in such a big way. Good luck with al of your studies
Alisha's Guide thank you very much!!
I got cancer and went to immediate menopause right after surgery/ chemo. I totally understand u. I admire how u can tell ur history so gracefully without crying. I pray for God to give you the strength and happiness u deserve. Don't lose faith. Science is giving enormous steps. Keep praying never give up. Send u much love and healing thoughts
Thank you so much. That really means a lot. 🙏🏾
I am so glad I found your channel. My son was diagnosed with Best's disease. It's a very rare form of macular degeneration. He's 6. Thank you for sharing your story. Definitely a new subby. God bless.
God bless you and your son! It's so rare, I just tried to google it and no searches came up. I'll pray that this disease builds resilience and character in your son as he's going to live a life that very few will comprehend. I've been down quite a bit over that last 6 years over my macular degeneration but I have also realized without it, I wouldn't be as resourceful, compassionate or have a voice to be honest without it. So I'm eager for you to see how amazing your son will grow up to be with or in the absence of treatment for Best's Disease. Take care and thank you
Great video. Sorry for your condition and I hope things are going well. You are gifted speaking and explaining.
TYSM. Appreciate your compassion
my family has the same genetic disease which affects me ,my brother ,and my cousin. but i find it ironic how life takes away its gifts from people who use them the most unlike those who waste away their life.i cant lie ,this slightly angers me but i remember that we have to be happy which cures my anger and i accept life.
Thank you for sharing your story & explaining how you live. You are truly an inspirational, beautiful strong woman. I love your channel - keep it up & stay strong!
Thank you! I'm living my truth and I feel like sharing it and helping others is how I'll be able to make the most out of the sturggle
Diagnosed when I was 13. So glad to find someone else who gets it x
+xCatherineBrabinx Yeah it's literally the most awkward time to drop a bomb like that on our lives 🙈. Hope you're managing well!
Thank you for sharing and providing this insight, so appreciated
Hey Alisha
i just want to thank you for sharing this video,i have the same story like you,and i really felt inspired when i saw the video :)
Hey I'm glad my jouney can help you on yours. Stay strong and stay posiitve
I’m 27 and in the last year I’ve gone from 20/20 to 20/300 and had genetic testing and got diagnosed with stargard. It was extremely frustrating at first but it has gotten better over time.
yikes sorry to hear. Hope you;re managing best as you can
thankyou for this. Some times I feel soo hopeless. I look at people who dont have to deal with what I am and het envious. but I really needed to hear this Thankyou. were all going to be just fine. keep faith in God.
+Janea Tucker yeah, it's extremely hard comparing yourself to others who can see what the average person can see but know you are still capable, you're still great and you're still awesome regardless of your condition
I’ve just been diagnosed with this disease and I’m trying to wrap my mind around it your video helped a bit to understand
glad I can hep. Take it one moment a time not one day sometimes tahat's too much lol it's heavy bur you'll be ok 🤍
You are such a beautiful lady. So sorry, but people don't understand things they haven't personally ecperienced. Just realize that what doesn't break us makes us stronger. You are strong.
thanks love 🙂 and thanks for understanding it really does!
Hello,
I think your videos are very encouraging. I can tell you have the issue not by your video itself, but, by the specific advice and tips you give. Especially about vitamin A. So, the negative comments are very obtuse and should be ignored. I have to deal with this every day by people who doubt me. I just feel so sad for people who make comments that are baseless and unfounded.
I think your advice is so specific and well-researched that you obviously know how this visual impairment affects yourself and others. Keep going strong and remember that you inspire others to do the same.
+Venu Varanasi thank you so much! Yeah I wanted to be well versed in my disease and my background in nutrition leads a Hana's in me understand things like how vitamin A works for the eyes. People don't know when they judge and they jut talk. It's sad really
hi my name is Bella and im a junior in high school and im going tough a similar struggle, i was diagnosed with the same diagnosis at the age of 11 and i totally relate to everything you said except im arid im going to fail high school because i cant bring myself to face how serious this condition really is.
Stay strong Alisha we love you 💜❤️
Thanks love!
Thanks for sharing even more info about Stargardt's. I can't believe ppl would think you're lying about it though!! smh...
+Danielle Bee People are crazy I've learned hahah
Wow you're so inspiring and you insist amazing!! Im so proud of you! Thank you for sharing your story!
😃😃😃😃😃. Thanks! And thanks for being so supportive
I had perfect eyesight.
At age 10 I couldn't see clearly vision was blurry. I have being wearing glasses first 7 years. 17 now I have high myopia in my right eye. My vision gets worse very year and It should stop as the body stops growing. Usually age 18 or 25.
Still everyday I fear of going blind. You are very strong.
Hey Someone (cool name lol) It's very hard what you're going through, I've read up on Myopia and it's so hard dealing with something that's always getting worse. Know that part of being strong is knowing where you're at with things meaning you're strong too. It's an unfortunate path you and i are on but we can make it beautiful if we effort it.
I love you and your videos because you are so relatable. I have RP and it is a struggle trying to explain myself to people. the only thing I kind of had an issue with is your statement about being against canes and guide dogs and stuff. I started using a cane about 2 years ago and it was very difficult for me because of my pride and stuff. but it is very useful and not just a portrayal of blindness by the media. I totally get if u don't need it because u can manage but some of us need it and hearing a statement like that may sound discouraging. no hate I swear I just felt like I needed to point this out since using a cane was a very hard decision for me to make and if I could make it easier for others to make that decision then I want to do everything in my power to.
+Daniella Salvatore I understand and apologies for coming off as negative with regards to the white cane. I have a lot of resistance to it for many reasons. One of them being at this time it doesn't work for me and I have a strong desire for something that can help with focus and detail. My friends with RP love their canes and dogs but our visual needs are different. I'm grateful that I have my apple products to help me out day to day. I have hope that something will be created soon though! Best of luck to ya and happy the cane helps you get around.
You're so strong! Thanks for sharing your experience and all the information. I'm so glad I met you at the MUJI open house. :)
Hey hey! Thank you it was asesome to meet you too and are you going to the next one on Tuesday?
Yup I'll be there! :)
Stash Matters yay =D
youre so sweet! Thanks for sharing your story I wish you the very best xoxo
Aww thanks! 😊 thanks for watching and thanks for being so sweet!
I just got the call today that I have the ABCA 4 gene. I am part of a natural history study at the National Institutes of Health in the USA. It's hard. I am 20/60 in the left and 20/80 in the right corrected since I am also nearsighted and have astigmatism. I'm 37, a little older than average at diagnosis. Have you had an ERG yet? I've had 2 and they suuuuuuck. So disorienting. Anyway, good to see someone thriving with this disease.
Yes I've had allllllll the tests lol. Hope you don't have to do them often. Some people get diagnosed in their 40's when their gene 'switches' on so it's not unheard of. Hope yours stabilizes and doesn't progress and glasses continue to help. Take care
Think you for sharing you have Such great energy you r ratify inside and out
TYSM, 💜💙💜💙💜💙💜💙💗
Hi, My best friend Shelley is legally blind since birth and nobody else in her family has her condition. She to uses special equipment, occasionally the cane,for outside she wears special sunglasses.
However, she's slowly losing the sight she has left in both eyes and she's scared, and concern because
her husband also has health issues himself and despite her blindness she has always been very independent but afraid she'll lose all of that if she completely loses her sight. Her husband takes her everywhere, to work, shopping, appointments, to visit family and friends.
It's amazing how she maneuvers around when she's not using the cane, but as her friend I worry about how she'll get around especially at home once her sight is completely gone and her state of mind. . .will her depression get worse.
Well to start your friend sounds like an incredibly strong and brave individual. It's natural to feel depressed or lost while losing vision but it's a choice to use it to lift you up and create the life you want in spite of it. I hope your friend fights for happiness and independence and finds new ways to do old things. Sending love and blessings her way.
Oh my gosh I feel you girl on the bright light I go to the eye doctor every six months and I have a retina detachment so they use that same light it is so annoying and after it the little bit of vision that I have does not work for a good hour or so. lol blind girl problems
Lmao blind girl problems for real. Hope you’re doing well and life is treating you well
I can understand your problem. Me too suffering from this problem since last 10 years. Now I'm 20
Thanks for sharing and I responded to your email a few days ago so I hope that Eli’s.
God bless you. I thought I had it bad being diagnosed with glaucoma.
Hi. Thanks for your honesty. I’m not a 20 something hot chick, I’m a 54 year old Irish man and I can totally identify with you. I’m only getting to the point of respecting myself and not feeling shame about my vision. Thanks again
hey Pat thanks for sharing. Self acceptance is a continuum sometimes you will more than other times but at least you have the awareness to shed the shame and continue on the journey
You're incredibly strong~
💜 Thanks Hyuna
May god bless you
Girlfriend! -Your ability to convey info and capture an audience is remarkable!!! :D I look forward to watching more of your videos!
I have 20/200 (right) - 20/400 (left) as well, but I was diagnosed with this eye acuity around the age of 10/11 years old... so I guess I've had a little longer to adjust (-though it still SUCKS sometimes!) ;-P
I recently had a baby and the 2 hardest things about parenting -for me- are not being able to see my baby's face when he isn't right up in front of me and not being able to just pick up books to read to him! :(
It was a long time ago that I still had "good vision", but one clear memory I have was being able to see the definition of the shape of the moon, I used to tell my parents that I liked the "fingernail" or "sliver" moon the best. :) Now I can only see it when I look through binoculars.
Looking forward to more of your videos! :)
peace
+Mo Bra Oh wow it's so crazy that you wrote that! I told my boyfriend two weeks ago that I miss seeing the man in the moon and he said 'isn't it supposed to be a rabbit or mushu?' LOL Whatever it is I can't see anymore and it bums me out. So I completely feel ya on that. I think that incredible that you still were brave enough to have a baby. Motherhood is hard enough but being blind on top of that? 👏🏾👏🏾👏🏾 Hope they'll be something one day so you can see his face clearly 💙
word. ;-)
I have glaucoma and went through hell trying to get diagnosed so I do know how you feel and how frustrating it can be when people just don't get it
Hey Barbara that's one of the trickiest parts - people not understanding hopefully you'll meet more people in your ocmmunity that can relate and you have the blind fam on here too. It really makes a difference when you can relate
I am 51 and was recently diagnosed with iritis which is inflammation of the eye. I was told by specialist that the inflammation is caused due to something else in my body it's been about 2 months now which treatment steroid eye drops and it hasn't been any Improvement and my vision in my left eye seems to be getting worse to where everything is blurry. Sorry I just had to vent it's really frustrating not knowing what's causing the inflammation in my eye and and being told by one of the doctor that he's really worried about my eye and not being able to see well out of my left eye it's extremely frustrating and worrisome smh
Don't apologize, it's ok sometimes it helps to share. Hope you are doing better, I really hope that things turn around for you
Targaryen understand is very very very frustrating specially when you try to explain that somebody in one thing I can say is nobody can understand until unless they've had the really walk in those shoes so I understand exactly what you're saying and I hope things are going well and and in a little bit better for you but I've had stargardt's disease since I was born so I definitely understand and good luck to you
TFS yes it is frustrating and can be hard to put into words how we feel about our lived experience. Yet, we still do it! it's a funny situation to be in
@@alishainc for replying back to me yeah I'm just trying to do the best I can and hope you try to do the best we can with the with the vision that you do have and you know just go from there I see you are hard-working woman just like I'm a hard-working individual myself hard-working man so you know I definitely understand
Thanks for sharing your story we mite don't have the same eye disease but can relate in so many way
Thanks for watching! I'm happy this video reached you and I hope that your vision is stabilizing. ❣👁
The “telescope” is called a monocular. They are actually quite useful for some people. I have 2 of them. I’m legally blind, and am 20/200 with correction in one eye and 20/300 in the other. I don’t typically correct though. I find glasses distracting and I can’t wear contacts because I have nystagmus (involuntary eye movement).
Star's Adventures thanks for sharing the name. At the time my vision was around 20/40. It didn’t do anything for me. I’m past 20/400 in both eyes doubt it would be useful to me now anyway. Sorry to hear glasses are distracting
Alisha's Guide I mostly use my monocular for reading menus and whiteboards. If I go to a play or some other type of stage show I use it for that as well.
I do use glasses for watching movies. They are useful for that type of thing. :)
Thanks for sharing your story.
Thank you as always Cindy!!!
I realize this is from eight years ago but wished to invite you to my podcast to talk about your journey. Thank you so much!!
I love thisssss❤️ I’m also legally blind! Your so inspiring. I have Retinal Vasculitis. I will be posting a story time about me going blind as well soon 🤗
hey love I've never heard of that disease sorry you're been diagnosed happy we can relate even if it's not in the best of circumstances. Message me when you post it xx
okayy, I will definitely💗I would love to talk sometime. I feel like we can relate a lot
and walmaret sent me to a pestilent too and it took me like 4 doctors to get diagnosed too.
how do we donate to your group? I'm so proud of your initiative and philanthropy.
+Danielle Bee Thanks I already raised funds through go fund me. I may do another once we clearly map out where every single cent will
Be delegated to 🙂
Im losing my vision now and i understand
glad you relate hope you're doing well
I’m in a similar situation. It’s possible I may have to go out on disability one day.
I have start ridge as well although mine has gotten badd I'm Twenny. 600 plus.. The family still don't seem to get it. As there are times I need their help and they just walk off.. I'm to the point now looking into getting a guide dog as I wanna be independent and save with my travel. Just found something called the or Cam my eyes Which will attach to the sight of a pair of glasses fairly small and read for me. It can also recognize faces and stop lights. Like having a pair of eyes that top to you that are not your own. There was only 10 when my vision went to legal blindness. However I did find it interesting about the vitamin a as no one has ever brought that up to me before.
Very interesting finding. Let me know how it works for you. Thanks for sharing Uruk story.
God bless , pretty ! ❤️❤️
I just found out I have it too, just today. My goals down the drain :(
+Fernando Posada Have hope my friend. You will overcome and who knows? Maybe you'll stil achieve your goals or discover new ones ...
Alisha's Guide Many won't understand this disease, but instead throw a million questions first, but hey you're right, some doors close, but others will open. Thank you ! (:
Omg can i meet you are the first Canadian person on you tube that has the same disease then me..... I'm 35 I and I just got my final diagnosis (last Thursday) my ABCA4 gene is also wrong. I'm from Montreal. I also made videos about my disease but they are in french
+Sophie en famille Hey!!!! If you're ever in Toronto during the FFB event we have to meet up! I wish I were still fluent in French but I'm so happy that you too make videos on this content 😘
I am 20/200 and 20/400 and going blind myself. but luckily my glasses luckily help me be able to drive but I am going blind in my central vision and right now only my right eye has lost all central vision. They told me my left eye will go but don't know when.
+Sunshine Cheyenne It's good that glazes still help. Just stay positive, don't stress and you'll be alright 💕
Alisha's Guide thanks so much. I'm trying but everyday I feel like I'm walking around like a ticking time bomb waiting for my other eye to go.
Sunshine Cheyenne like the sword of damocles😢
I totally agree you going to Sephora it alleviates and lifts the spirit
Yeah it's like therapy! 💅🏾💄💋
Im 12 and my vision keeps getting worse every month and right now i have glasses that i cant see out of and my parents cant afford new ones :/
+Focus Nails sorry to hea. At some point many ppl with stargardt’s like myself don’t wear gkssses because they don’t wirk st all. If you stay strong and positive you can manage regardless
She's so beautiful
Hi btw what signs do you have before being blind?
my newest video answers this
The last time I went to the eye doctor my experience was similar. The bright light in my eyes... he kept it in my eyes for a torturous amount of time! Then said he saw something like a mole looking thingy... I should go see a specialist... I don't have money though. No Stargardt's yet anyway lOl
Oh man. I hope it’s not stargardts and everything is ok. Fingers crossed it’s temporary for you
dear,pls let me know why not u trying the nano-grade drop by loratis?my 7
years kids also with stargaurdt,pls suggest me.......im from
bangladesh...thanks
Hi Alisha.Great video and thank you.I found out that I have startgardt disease.I don't know to much about Startgardt disease.Do you can write to me,what I can expect of Startgardt?I never be comlitly blind?Now I am so terrible and bored and confused,I know that I must go forward but it isn't easy,you undesratnd me.Thank you Alisha!I hope that I will never be blind.All the best.
Hey Miso =)
You will never be completely blind luckily! My doctors have said that it vaires for each person but funnily enough my two IRL friends with Stargardt's are both black ladies with a weaker left eye. I've been connecting with people all over the world of different ages and genders who have some things in common but like anything else have different experiences. I still work as do some people with the disease but some people have reached the stage where they are no longer comfortable or can no longer do the work. I have two other Stargardt's related videos on here you can check the links in the info box. And of course if you have any vision questions email me or dm on my Facebook page. Take care!
I got wit maculer degenration and im scarey from become blind im 31 is any one here have same condition
Cool support group I'm new to this channel
I really can see. I think I have glaucoma but I can't make eye contact either people tell me look,at me I say I am but I can't see you so. So yeah its hard.
hey Jane yup I go through that too. I worry sometimes that people think I'm rude or deceitful because I don't make or hold direct eye contact. I try not to get in my head too much.
I was diagnosed 2 years ago. Any advice?
I have lots of advice lol but I’d like to know what you want advice on. My general advice would be to stress less and stay positive but if you have a specific concern you can ask here or DM if you want to keep it private
Alisha's Guide I will dm u on insta thx sm
i wish we could do a calab video together.
is it me or do you look like Akemi from an anime called How heavy are the dumbells you lift
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hello there I'm Sam thanks for sharing I've heard of this eye condition but never been too familiar with it I am visually impaired myself however I don't have stargardt's disease I'm just totally blind in my right eye I have glaucoma which is taken about more than half of my peripheral vision the little telescope that you mentioned I actually use something similar to that it's calling monocular I use that for reading overhead menus in restaurants I sometimes need help using those new soda machines with the touch screens cuz some of them the fonts are too small I'm not able to read standard newsprint everything I r Reid has to be under high magnification this comment is being made through voice recognition on my phone being visually impaired does have its frustrating moments I too cannot drive at least you had a driver's license I never even got the chance I've been visually impaired practically all my life I also have congenital nystagmus which is movement of the eyes that affects my depth perception doesn't allow me to focus clearly. I've never used a white cane myself either cuz I really don't need one to get around but I have thought about starting to use something that they call an ID cane it is like a smaller Slimmer version of the white cane it is only used to tell people that you are visually impaired I would mostly need to use it when Crossing busy intersections most of my life I didn't want anyone to know that I was visually impaired either I also tried to hide it even through school now I'm at the point in my life 48 years old not really care anymore what anybody thinks it's better that they know that not know that I don't see well.
+bluetech7753 Thanks for sharing. Yes, I'm very grateful that I had 20/20 until I was 19 and that I still have vision now. It's hard for all of us whether low vision, legally blind or blind. We jus gotta keep our heads up take cate
Hey I’m looking through videos to help me get though this time right now. I’m having serious problems with my vision and I’m scared of losing it. I went to an optometrist a few days ago and got my eyes dilated and checked the doctor said everything looks good that all I have is ocular migraines and I’m not convinced everyday it seems my vision is slowing messing up. I’m really scared of going blind and need support or help. Any tips ? If you can, can I add you on Instagram or Snapchat to talk to you. I feel so left alone
Hi thanks for trusting me to share your story. I t doesn’t sound like you have stargardts so I’m not sure how your vision will progress. I know it can be isolating going through anything where you don’t know anyone else who is loving the same thing. My only advice from what you’ve told me is to find a professional who can work though your anxiety with you. Adam, I feel terrible that the optometrist doesn’t have a clear cut answer for you. You might need to reach out for some resource to cope with these feeling especially if this progressing fast.
Im 14 and i cant see my own hand even if its in front of me
sorry to hear, that can feel overwhelming but you'll learn to manage and create your own sense of 'normal'
do you use a cane? can you do a video on the different devices you use:)
+Brittany J Branch nope I'm anti-came. I use my iPhone and sunglasses when it's bright out
No lie when I was offered a telescope I cussed him out lol 😂
Wth does legally blind mean?
Legally Blind is what the government considers blindness, it’s vision worse than 20/200.
Hi Alisha!My girlfrind has Strtgardt disease!Today,I speak with girlfriend about startgrdt and I'm here for her,but I heard that Startgrdt lead to complitly blind,but she tell that strtgrdt dont lead to complitly blind..What is true?I hope that medicine in next few yers will be devoloped and find cure for disease.But for example,if they can't find cure she dosen't be blind for example in 50-yers ,when she be older...How is your.boyfriens reacted on this...I love she but I worry...If she will be completly blind,do I can accept this,I am so confused😑Sorry on my English and my bad grmmary,all the best😀
Hi! Luckily Stargardt's Disease does not cause complete blindness. Instead most people become legally blind (like me) where most or all of your central vision (Macular) has deteriorated. It's scary because it's fdifferent for everyone, some people lose a little and it stabilizes and they never lose more, some people lose a lot or are like me and lose rapidly over a period of time. Some people even lose most at a younger age. So it's depends on your girlfriend
As for my boyfriend, honestly he's been more accepting about it than I have. He's very helpful , beyond understanding and seriously always willing to do things like read out entire menus or forms. Hope that helps. Take care
Stem cell research or therapy may be able to help or esight
they are done phase two trails
Yo can we please be friends I have stargardts and I’m fromBrampton too
Hey Ashley Hey yeah! you're part of the blind fam now we got you
b -town eh? I've heard it's changed so much in the last couple of years