I Have Star-Gardts Pt. 3 (Not the End of The World) ~ Can U Dig It???

[856june]

Wow!!!!! I am definately at an emotional low point of dealing with my disease.Just hearing from someone that's been through and understand is uplifting. Thank You!!!!

[SamoanSweety]

thanx for your story.... its exactly my life.... I'm just now discovering low vision aids and own NONE..... 38, with caraticonus and stargarts and when I lived in FL, DOBS didn't take me serious and did not help me either... I live in Germany now cuz my husband is AF..... so thx for your story... it was quite comforting...

[moproductions1000]

Hey,

I have star gardts and i have never met anyone else with the same condition. It would be nice to get into contact with you. I am young and married and have an almost 2 year od daughter and feel absolutly helpless sometimes.

Look me up on facebook.

Megan McMinn

[WithLoveDana]

hey,i watched your show and its really nice to see someone with this condition feel so good and do so well with their life. I have stargarts too and its succh a huge change because i had perfect vision just before i started secondary school, i live in england. Your video has helped a lot and i was just thinking if you would like to be email buddies or something LOL because i have never spoken to someone with the same condition as me. :)

[ttopcar]

@WithLoveDana It is a HUUUUUGE change isn't it?!?!?!? Geesh. I've learned how to compensate and "accept" it but I have my moments LOL.  You can find me on Facebook if you're on there too. facebook.com/?ref=logo#!/ttopc­ar

[WithLoveDana]

hey,i watched your show and its really nice to see someone with this condition feel so good and do so well with their life. I have stargarts too and its succh a huge change because i had perfect vision just before i started secondary school, i live in england. Your video has helped a lot and i was just thinking if you would like to be email buddies or something LOL because i have never spoken to someone with the same condition as me. I know im only 14 but it would be really nice to talk to you:)

[Lizmitisa]

My name is Lizmit and I have Stargardt , I like yours videos , thanks for do it .

[ttopcar]

@Lizmitisa Thank you, Lizmit ;D

[Lizmitisa]

I`m Lizmit and I have stargardt disease. I`m in mexico, please contacme . thanks .

[Lizmitisa]

Hi Michel , my name is Liz and I have a stargardt`s disease . I`m in Mexico, please contact me .

[sujaybarad]

The group on facebook is called Stargardt's Eye Disorder Support Group. Another group is called the Stargardt's Awareness Group. Both have really interesting discussions and everyone there is really great with offering advice and well giving tips, whether you are a teacher or guitarist or whatever, u r not alone.

[ttopcar]

..continued.... What career were you considering? When my vison go tot he point where I needed aids, I had to think about what kind of job I could perform where I my vision wasn't needed. I'm in school to become a counselor ;D Good luck on your orientation!

[sujaybarad]

@ttopcar Yeah i was originally going to do counselling, to become a counsellor, but then discovered the love of teaching kids with learning difficulties and disorders, which i did for two years after my degree at an amazing school. Because i had no formal degree with special education i came here to do that for masters, which had a year of just primary education as well...

[ttopcar]

What career were you considering? When my vison go tot he point where I needed aids, I had to think about what kind of job I could perform where I my vision wasn't needed. I'm in school to become a counselor ;D Good luck on your orientation!

[sujaybarad]

hmmm for some reason i get an eror trying to post a link to that site. in any case, there is a support group on facebook that has additional info as well as cool helpful peeps.

[sujaybarad]

Oh and by the way. some company called advanced cell something just found treetment that works on animal subjects while meeting safety requirements by the FDA. They will be starting human testing later this year. I think this brings us very close to a cure even if it fails.ok most people are possitive about this, but i think in worst case senarios.

[sujaybarad]

I'm bumping into stuff now... which is whack. And i might need to change careers too... aftet my masters... which finishes in june. So it is pretty sucky. All in all i'm starting orientation training and stuff like that 2moro. wish me luck. And ill do the same for all of u too. Stay tough.

[sujaybarad]

I started loosing my vision at 6. didn't get diagnosed till i was 12. In Kenya there wasn't much support for me at that time, But i floated through somehow. i'm 25 now, in Australia and doing my masters but my vision has gotten alooooot worse.  cntd...

[phoenosso]

hello

my name is Phoebe and i'm 21 and have Stargardt's too. I'm not legally blind yet but i cant drive and read w/o help. watching your video made be cry because i have been so depressed lately with my life. I just graduated from college and now i can be a surgical tech, but my vision sucks so bad. my parents paid for that expensive college and i wont be able to continue w it. I dont know what to do. i cant stop feeling bad for myself.

[ttopcar]

I'm so sorry that it has taken me over a week to acknowledge your comment. I hope all is going well with you. I canunderstand your frustration in possibly having to switch career choices but maybe you won't have to. With Star-Gardts the vision deteriorates differently for all of us. It may remain at a "workable" level for you where you would still be able to recognize the surgical instruments, maybe even memorize their placings. If you beleive it..You can achieve it ;D Keep in touch ok?

[wintr88]

I have a close friend who suffers from Stargardt disease. Her vision has been slowly progressing, recently, and all she wants to do is barricade herself in her bedroom. I'm doing my best to support her, but she doesn't want anyone speaking to her. What can I do to help my friend?

[ttopcar]

WoW...that makes me so sad and I wish I was there to Hug your friend...cuz I know. Have her watch my video. Go in and cry with her. She needs to get those emotions out so she can move forward. Tell her about the visual aids that are out there for us..because God knows I had NO idea they were lol. She's going to feel like how can you possible understand..let her know that you can't..but that you can understand what it feels like to be scared and confused/uncertain about her future.

[ttopcar]

Is she employed? Does she live alone? You can send me a message through YT if you'd like so we don't have to put her business on Blast this way LOL. But you are a good friend for even doing the research and finding this video in the first place ;D I'm glad I made it.

[Carranza1967]

Listening to you speak brought tears to my eyes. I have tried telling people what I am going through and they think they understand but i know they never really will. I have asked my self why me b/c I am the type of person who does the right thing when no one is watching. The answer that came to me was why not you GOD chooses his best to make examples of. I would like to thank yo for saying what i thought no one else felt

[ttopcar]

Wow...Thank you so much for your comment. I hear what you're saying....the sighted can't truly understand or empathize....that's why I did the video..to reach out to others that feel all alone in this. Thank you again for sharing.

[sendtobrad1]

I have star-gardt's as well. I was diagnosed at age 8. My younger brother has it as well. His scars are a little less severe than mine, and he is actually able to drive using bioptic lenses. Have you ever considered checking into that?

[ttopcar]

Hi! Thanks for leaving me a comment and sharing with me. It means a lot. I've heard of those lenses but No, I've never looked into seeing if I could benefit from them. I think I'll wait till after the gas prices are down for good LOL!

[shaunfraser8]

in 6 years there will b a cure hopefully fingers crossed

[chcltsxygrl]

Thanks for sharing this. We all have different things that we are dealing with, and this video can help anyone with any type of issue to overcome. Thanks for the encouragement.