Stargardt Disease | Going Blind

This is my story about going blind and living with Stargardt disease.

My goal is to raise awareness of this disease and to connect with other people around the world affected by this disease.
Leave me a comment and let me know what you think!

________________R_E_A_D__B_E_L_O_W___________________

Connect with me on Social Media! :D

Instagram: @jessicaparsell
Facebook: Jessica Parsell
SnapChat: jessicaparsell
Twitter: @jessparsell
Google+ Jessica Parsell
____________________________________________________________________
MAILING ADDRESS:
Jessica Parsell
PO Box 700303
Kapolei, HI 96709

___________________________________________________________________
Discounts and Links:

Save 10% off on your order with JESSICA10

Save 10% off on your order with JESSICA10

20% off discount for being referred by me! Tell her Jess sent you!

[aszulllo]

Exactly the same issues - drink my beer when everyone else reading menus - walked into the wrong restroom oops - many microwave mishaps - constantly misplacing things can spend a whole afternoon looking for keys - thx for the video

[rezDancerChick]

I was diagnosed yesterday and this video has been SO VALIDATING. I’ve been taking photos of directions or looking up restaurant menus. Thank you for sharing this. It’s been very comforting.

[Joe-rcwh]

Hi Jessica, I know I’m a little late for the party but I just wanted to say thank you for spending the time to share your experience. It can help many people. I started losing my vision at age 7 in 1962 and didn’t receive a diagnosis until I was 843 so I’ve been living my entire life dealing with star guards, but the one problem I had to laugh. What is the problem with finding the bathroom still an issue all these years later and even the iPhone didn’t fix this one!!! So I just want to say thanks and keep putting up the videos.

[shellymm]

Thank You for this video! It was so refreshing to watch how positive you are especially with your Condition.
My husband was just diagnosed with Stargardt back in August. It's been so hard for us because his vision has been perfect up until a year or so ago but has been getting increasingly worse these past 6 months. He no longer can drive and it effected his work to the point where he can't perform his job duties, so pretty much is not working right now and in the process of trying to figure out what he can do to provide for our children.
What really gets me upset is the Dr. Who diagnosed my husband was pretty much this is your disease, there's nothing g I can do for you so no need to come back here and sent us on our way! He gave us no references, no direction no help what so ever! He left us to figure everything out on our own and we have no idea what we are doing. 😔 It's been a challenge and I am hoping eventually my husband will become more positive and embrace his condition, I know it will happen he just needs to find his place in life again. I'm glad I found your channel 💙

[Aurorah]

Hello thank you for your video. I too have stargardts and was also diagnosed at the age of 14. A lot of things you mentions I also do. Made me laugh. Especially the one about “reading” the menu. I do that all the time even though I can’t see it. A lot of the time I look at the pictures. It’s nice to know that there are others who do the same things I do and that I’m not alone. I also think positively about my disease. It gave me the perspective to be thankful for what I have and not dwell on what I don’t. However it has its moments where it gets emotionally difficult. I live in an area that doesn’t have public transportation so I have to depend on someone to take me places so not having a sense of independence becomes a little challenging, but I get through it. So thank you for sharing what you go through.

[j-manmarkus]

Thank you for sharing this. I'm trying to help my friend, whose eight year old daughter was just diagnosed with it. We're trying to get her into clinical trials. I hear they have a modified vitamin A drug coming out that may help treat it. Are eye injections dangerous, even if they are FDA approved? Thanks again!

[forever-fzhk]

1st Iam too suffering from same and ppl like u sharing stories is great for me..It's hard to express but getting info with ppl like u is great help..
2nd u are my CRUSH ...You are beautiful...Please continue doing such noble work educating others whose eyes are showing them dark but making their life brighter..

[johnlopez]

Hi there, thank you so much for making this video. I’m glad I found it today. I have Stargardt’s disease as well. I’ve had it since I was 13 years old and now I am 54. So much of what you said is exactly the way I live my life on a daily basis. So many people have such a hard time understanding these things but I’m glad to find other people that do understand it.

[mtasem]

Thanks for sharing your wonderful positive experience, I have Stargadt disease too. It’s one of the best things that happened in my life because of it. I studied occupational therapy which is my passion and helped me personally to be more independent and active community participant and person who advocate for those people who suffer from visual impairment or any kind of disability.
Now, I am doing my specialization in education for students with multiple disabilities include Deafblindness Perkins school for the Blind at MA
I wish if we can meet one day … respect and love for you all

[neilhillyard]

Thanks Jessica. I too have Stargardts but mine did not start until my mid 60's. I am a lawyer whose practice was courtroom trials. If my Stargardts would have begun earlier I never could have done that as you must be able to see faces. Today I still practice but in my office. I use computer software (oomText), all sorts of electronic magnification devices and I carry in my pocket a a Pebble mini. My son found a software program which reads anything on the computer to me and this is great. I have walked into the wrong public bathroom! My law firm supports Vision Walk every October and we have a team. I had to begin using public transportation and, while I really missing driving, it works fine. I am a very luchy guy!

[SeeingBlind]

Hey fellow Stargardt’s YouTuber! 😺 so glad tour vid and Channel popped up on my feed. Can’t wait to explore more! PS so jealous of your camera set up. Hopefully someday I can splurge and upgrade from my phone Lol 🤣

[Colleenxtc]

I do the same! I have Stargardt‘s disease and was diagnosed at the age of 10. It’s crazy all the little things you do just to try to fit in.. lol. But I’m 24 now and Ive figured out how to live and accept my disease. Thanks for this video. You’re awesome!👏🏻👏🏻

[BlindtoBillionaire]

Hey Jessica! Wow, you’re doing such an amazing job with subscribers! The last time I was on your channel about two weeks ago you were at 662. Wow, 100 subs in a couple weeks! That is so cool. Sorry for the delay, I have been out of town and just trying to catch up right now on your videos. Thanks again for everything you’re doing, you have an awesome channel and provide a lot of interesting and informative videos. I really enjoyed listening to your content! Keep it up, you’re doing an amazing job! Matt

[shaziabegsiddiqi]

Thank u for sharing! I have the same disease and this really helped me

[marmaid-princess]

I have Stargardt and was diagnosed late in life...only 3 years ago and I’m near 60 now. I don’t worry about it much...I’ve always had it but it’s just worse. Thanks for talking about it. It’s hard to find people with this condition.

[BlindtoBillionaire]

Hi! This is my first time on your channel and I am loving this video! I am also losing my vision because I have retinitis pigmentosa. The interesting part about your vision loss compared to mine is that it is like our conditions are opposite. I am losing my Perfield vision while maintaining some central vision, while you are losing central vision and maintaining peripheral. This is so interesting and I really enjoyed watching this video. I am excited to go explore your channel and watch more of your videos. Thank you for another excellent video, I look forward to seeing you in more videos soon! Thanks again, Matt

[taintedrecords]

Thank you for your video, I have the same condition and thank you, I feel I'm not alone

[howardhudson]

I was diagnosed while I was in the Army from Stargardt's disease. It has progressed to the point that my vision can no longer be corrected. I do see the floaties but dark spots as well and one large blur spot when I move my eyes. Cataract surgery helped some but in some ways made things worse as I can no longer read small txt without the aid of my camera on my phone.

[lesegomotsomane]

Im 42 was diagnosed with stargat in 2019 i have exactly the same symtomps im so far i have accepted how i should live my life. And i thank God im not blind i can still see things even though my. Central vision cannot. See properly

[britneyberggren]

Hi,
I watched your video today because I am in a relationship with an amazing man who happens to have Stargardt. I am kinda always reading up and looking for more information. I really enjoyed your video, it had a few things I handy though about or heard about yet. A big one was the menus the minute you said that I instantly recalled every time he asked me “what do they have babe” and I took it as just conversation but never thought it could be due to the tiny print.

I will be looking through some of your others and look forward to hearing what you can shed some light on as well as your story.