My daughter who is 44 has this disease diagnosed at 18, she's amazing and has adapted amazingly,I'm so proud of her and what she's achieving,she never asks for help and has a 17year old son, and is a wonderful mother. 😊

I just got diagnosed with it. My biggest problem is getting my eyes to adjust to a room after I've been outside in the daylight. Does anyone else have this problem? Thank you for this video you posted Jessica!

We are so much people with Stargardt . I wish you all well 😢

I have stargardts and it’s so good to hear from others with it too. I was diagnosed 4 years ago and I’m 42. It’s been hard and I’m working on it ❤️

Thank you for sharing! My friend's eight year old daughter just got diagnosed with it and we're looking for ways to treat it through clinical trials. I hear there is a new medication that may come out soon and we're hoping it becomes available soon.

I can't tell you how much I admire & respect you, Jessica. I am 63 & a while back I started losing central vision. I was absolutely TERRIFIED & thought "I am way too young for this." It didn't take long to learn that is definitely not true. The drs have all gone back & forth about my diagnosis but finally settled on "a form of macular degeneration" which is, of course, very similar to Stargardt. It is ironic that I stumbled across your video because lately I've started to become really passionate about the importance of RAISING AWARENESS. I feel that God has put it on my heart to "DO SOMETHING." You're so right that 1 really easy thing people can do to be helpful is actually identify themselves when they see us. When someone is close by who we've known for years it sometimes puzzles or even annoys them that we don't speak.. (I actually had that happen!) So when people learn we 'literally' can't tell who they are they will know next time what to do. Another thing I believe would be very helpful is for employers to actually educate new employees that when someone says, "I can't see that" when asked to 'tap a button' at check-out in a store/restaurant they may actually need a little help. Not knowing how severe our vision issues are they will often simply push the machine closer, which, of course, will not make any difference to some of us. Pointing to the correct button, or asking a "yes" or "no" question & then telling us, "Ok, push the red button, or green button, etc." Obviously that is something anyone in line can do as well. We don't mind, rather we appreciate your kindness. Anyway, THANK YOU, Jessica for what you are doing. You are a beautiful young woman, inside & out. HAPPY NEW YEAR, everyone!!!

Jessica, thank you for this message of hope and positivity. I am newly diagnosed at 57 and have been struggling with the implications- will I be able to keep working? Will I lose my ability to drive? Will I end up blind and alone in an old folks home? It was a negative spiral. But you helped me- as well as the positive comments here. I am wondering if there is a support group online? If not, maybe you can start one.

I have Stargardt Disease I don't have a black spot or void, i have a hourglass effect, with a bubble in the center of my field of vision in my left eye. Thank you for sharing!!

I thoroughly enjoyed your video.i am danish hussain from pakistan and i am also living with stargadth since my birth.i am a social activist and legislative researcher.I truly can feel and grasp the core feelings of every individual whoever is visually impaired and specially who is affected by the stargadth disease.my little piece of advice to all my relevant friends is that never ever give up.always believe in yourself and in your potential and abilities that you are blessed by nature.don’t focus on your biological deficiencies just concentrate on your mental efficiency.always think positive do positive results must be positive.

Thank you for this video. I also have stargardt’s and I will never give up on achieving my goals and dreams. Thank you for helping us to build a positive vibe in our community.

I was diagnosed at 37 years old. At first they didn't know what was wrong and after several testing and specialist they found out that I have it. Thankfully, since diagnosis I have not had a lot of changes or decline. I am like you. I do not see the black. It's just my brain kind of fills in the gaps where things are missing. Thank you so much for reaching out and being a voice. For a few years I just kept it quiet and didn't let anybody know. But now I am able to talk about it more and just let people know that we can live the same life. We just might live it a little differently and find different ways to do things❤

Loved this, Jessica! Thank you for sharing, and so loved hearing that your life has been so full. I have Stargardts and also don’t see the black dog how it’s usually represented!!

I am currently 33 years old and have been living with Stargardt’s for 22 years.My vision has progressed passed 20/500. My eyes still play the trick that you talked about where you don’t really see the black dots in the middle. I have noticed that the “voids” are getting more and more prominent as my vision loss progresses. I have used my vision loss as inspiration to become a teacher of the visually impaired. I am hoping to help the community as much as I can as well, but I especially have a soft spot for kids.

I found out by accident that I had stargardts. I'm 60 years old and have dealt with this but it seemed like it wasn't really true up until Christmas Eve 2019 I got sepsis and was going into Oregon failure and it affected my vision even more. Recently I was diagnosed with being legally blind in my left eye. A year later I was diagnosed with my right eye now being legally blind. Everything has become challenging challenging. My family does not understand.My kids think that I guess that I'm faking if I ask them to open the window and call to me when they're picking me up they won't do itSubsequently I've almost gotten into other people's cars. I find it difficult now to read to do any of my hobbies. I really don't know what else to do I'm going to look for a low vision center by town though not really very hopeful.

I am from India. I'm 28yrs old female. 5 days before I came to know that I am having Stargardt I am so depressed and heart broken. Thank you for your words.

Thank you for sharing. I wasdiagnosed within the last 4 years and I sometimes get down about it but this inspired me to stay positive

I just got diagnosed. Thank you got this video.

My best friends mother has this disease and I asked her about it she does have the black dot in her vision

you are right when you say at an early age when you get stargardts like you I got diagnosed at a very early age thirteen or fourteen /and didn't really deal with it just kept doing everything everybody else did all my buddies and I think that helped me a lot dealing with it// I feel bad for the folks who get it later on in life and are used to a seeing life 20/20 so to speak// like you I have a younger brother that it didn't happen to him until he was in his thirties it's hard to get used to it that time in life// probably like you I don't remember having great vision very much in my younger days before I was diagnosed but I am 71 years Young and I'm quite used to being this way/// good luck in your future endeavors young lady

I was born with stargardt disease and I've lived with it for 32years, it has affected a lot growing up.my education, movement, relationship etc, out here people are very insensitive.i am always reminded about what I have like everyday, most of the doctors out here don't even know what stargardt is,I don't know anyone who has stargardt disease.

Thank you! I have it too and it's nice to be able to relate :)

I am 14 nd just got diognosed

Hi Jessica. I’m 68 and have been Dx with Stargarts. Early stage. I play a game on my iPad and there is a part of it where you use Magic Eye. I have been trying to improve but am having no luck. I think it could be the Stargarts. It IS scary. Thanks for doing this video. Lots of helpful info. My Dr. told me it is hereditary though I am not aware of anyone in my family having this?

I'm 15 with stargarts and I just wanna know can I still become a cop withit

Another naive report on SD. Put youself in my position. Diagnosed 10 years ago, now 65. I live alone. No family, few friends.. Once I have to give up driving I will be completely isolated. I love to travel and am a lifelong photographer. Both of those will have to go. I will have nothing to look forward to. I'm depressed as hell and often get extremely angry that this is happening to me.

I have a very rare eye condition called choroideremia. Because of this life changing disease, I'm completely blind in my right eye and what sight I have remaining in my left eye is like looking through a straw.😔

Hey, so my Blindspot isn’t black, it’s like three colors like the three printer colors. It’s kind of trippy looking. Is this uncommon for Stargardt’s? Do most people just not see anything in a certain area?

I feel like Stargardt is so misunderstood! Would love more awareness and association that this is a blindness! Since we aren’t fully blind people think we just have some random vision loss. But things like reading, driving, working just basic life skills are so challenging for us and can’t be cured or fixed with regular glasses.

It seems like they should have found some sort of gene therapy for this. Maybe try stem cell therapy for the retina as well.

I also have that condition

Hi do you have medication this disease

Im 18 and im also facing this problem

I have a kid of 8 with Stargardt

Hi there, I was also diagnosed with Stargatz and I was wondering if you became aware of any treatment or cure to suggest by any chance. Thank you 🙏🏼

dear my daughter any my son have stargardt too i don't know how to dial with them they faced a lot of difficulties in their education 😭😭

Hey i got diagnosed this year, i wanna ask when do you start to see the black dots? and does every stargart patient eventually see them?

Hey i just wanna know, when symptom started in you, does it look like blurred or distorted vision? Btw am also suffering from some kind of macular degeneration

Could you have had SD from birth but actually been living through it without knowing ? I’m 24 and I may have had it from birth I’ve never had 20/20 vision but horrible vision with no glasses and about 20/50 or 20/60 with glasses . They may diagnose me with it but I’m thinking I may have had it already