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• Posted: 2009-10-24 21:24:27 By Marcia H
• HI
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• college spanish course
• Posted: 2009-10-21 19:11:05 By Ellen S
• My 20 year old daughter has Stargardt's, and is a junior in college. She was just told that she must take a 101 spanish course as a college requirement to graduate. this has nothing to do with either of her majors; it is just a requirement. She took spanish in high school, but found it very difficult with her impairment. Her college would not waive the requirement. Does anyone have any tips or advice on how she can get through this course. Disability Services suggested she get a note reader. Any other ideas?
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• New Website - Blinding Ambition
• Posted: 2009-09-25 15:05:59 By Eldie T
• So I've had this idea to create a comprehensive site for the visually impaired community. A place to aggregate useful information on the subject, post related articles, and talk to others in similar situations.
  
  My first step is to build a blog to post useful articles and information. Please check it out and if you have any suggestions let me know.
  
  BlindingAmbition.net
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• Hi All
• Posted: 2009-09-07 15:01:47 By john l
• Hello, I'm John and i am a 21 year old who suffers from Stargardt's. I am new to the site and still getting to grips with it.
  
  i was diagnosed when i was 12 and my sight slowly progressed throughout my life. It has stayed the same since my late teens and for the time being i am quite happy. However i do go through my good and bad days emotionally and sometimes feel like i have my head stuck in a vice slowly getting tightened, not literally of course lol anyway before i start rambelling anymore i was just wondering if there was anyone out there around my age who would like to maybe chat as I've never spoken to someone else in my position
  Thanks
  John
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• ScyFix
• Posted: 2009-09-03 00:22:08 By Helene S
• Is anyone familiar with this "new treatment"? A seemingly respectable low vision care center in NJ is offering this. It's a low intensity micro-current that allegedly repairs electro imbalances in the macula? Sounds bogus to me, but I wondered if anyone here has further knowledge of or experience with it.
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• Thanks Brian
• Posted: 2009-08-11 19:19:32 By Lili G
• Brian,
  Thank you for your response. It means so much to me to hear those words from someone that has the same condition. Thanks for providing me with your e-mail address as well. I sure would like to ask you a few questions.
  Lily
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• Newly Diagnosed
• Posted: 2009-08-10 23:10:56 By Lili G
• Hello,
  I have an 11 year old son that was diagnosed with Stargardt's 10 months ago. It took a whole year for many doctors to come up with his diagnosis. His vision when from 20/40 to 20/200 in 2 years. I was devastated when he was diagnosed I didn't know what to do or how to help him. I still get depressed sometimes because I wonder if he is going to lose any more vision or if he's going to be able to get the job he wants, do the things he likes. Fortunately, my son thinks very positive and doesn't really worry about his condition, but as a mom I do. Can anyone give me an advice on how to deal with this situation or what is the best way to help him?
  THANKS,
  Lily
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• Thoughts on Having Children
• Posted: 2009-08-10 12:45:05 By Kendra D
• I am 27 years old and was just diagnosed with Stargardt's. Fortunately, I am still seeing 20/20, but the doctors are not certain for how long. Within the next few years, I was hoping to begin a family, but am not sure if this is a good idea. I am concerned that I won't be able to take care of my kid(s) and they may be teased for having a parent with a disability. Also, being unsure of my financial future, I am uncertain how well I would be able to provide for them. These days, two incomes are often needed to support a family. I'm hoping some of you out there can provide some sort of insight as this as been on my mind for awhile now. Thank you.
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• LMI
• Posted: 2009-06-19 21:21:52 By Angie P
• Has anyone heard about Lipshitz Macular Implants?
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• Stem Cell Clinical Trials
• Posted: 2009-06-18 16:31:13 By Georgette K
• Hi Everyone,
  
  I've recently received several google alerts regarding promising news from the Casey Eye Institute. It appears that they plan to file a request within the next 3 to 4 months, to conduct human clinical trails using their Advanced Cell Technology. The long term research done on rats and mice have proved to be safe and effective for Stargardt's and macular degeneration. It's encouraging to see so many different approaches being pursued to find a treatment for eye diseases.
  
  Georgette K.
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• Posted: 2009-06-16 12:59:19 By Rebecca A
• Hi Robin,
  
  I am 21 and would be happy to talk with your daughter if she is till interested. I have stargardts and was diagnosed at a young age.
  My e-mail is arrorm27@uwgb.edu.
  
  Please feel free to contact me.
  Thanks,
  Rebecca
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• Seeing Clearly Without Eyes
• Posted: 2009-05-18 06:02:02 By Sean M
• Hello, my name is Sean McElroy. I'm a 23-year-old college student with Stargardt's who's out of work and has nothing but time on his hands for the summer. So I've decided to write a book, entitled "Seeing Clearly through Blind Eyes. It will be a collaborative work of stgories of kids and teens with Stargardt's, Best's and other visual impairments and how they overcame those obstacles to acheive something that no one believed they could do. I want to know your stories, not your kids', not your siblings, I want to hear it from them, from their perspective, because I want the world to know how WE feel, not how the world feels about us. Everyone who submits will recieve a contributing author's credit, and all money raised from the sale of the book will be donated back to the FFB. Please send YOUR submissions to me at mcelroy.sean@yahoo.com.
  
  Thanks,
  Sean R. McElroy
  Arvada, CO
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• Looking for an e-pal
• Posted: 2009-05-13 14:37:10 By Tanice A
• Hello!
  I am a teacher of a 9yr old boy with Stargardt's in grade 4. He is feeling pretty isolated and I would love for him to be able to talk to someone his own age with the same condition.
  Is there anyone out there with a child who might like to be an e-pal with him?
  Email me at: tanicea@hotmail.com
  Thank you!!
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• brighness when eyes are closed and other symptoms
• Posted: 2009-05-07 14:45:45 By Suzanne O
• i've noticed, for a while now, that when i close my eyes in a dark room, that there is a brightness, for lack of a better word, behind my eyes that at times almost hurts. does anyone else experience anything similar?
  any time i close my eyes i see bright almost flourescent looking lights.
  when my eyes are open, there are these little "white spots" almost like little dancing lights. sometimes they look closer to neon colors at the edges. anyone else?
  and i've noticed more and more lately that ill be waling along on what appears to be a clear floor, and then right as i am about to trip over it, an object seems to "appear" from nowhere right in my path. the object is definiely there, but i was "seeing" a clear floor where it was. also, i will sometimes knock over a glass that i could have sworn wasn't there becuz i swear i was looking at an empty spot on the table.
  has anyone experienced anything similar?
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• city versus suburbs?
• Posted: 2009-05-07 14:40:51 By Suzanne O
• i'm just curious where those of you who are adults affected with SD live?
  i grew up in southern california, where i always had to get a ride, so i moved to NYC for college at 18 and the ability to get around independently was great. upon graduating, (shortly after 9-11) city life got to me and i wanted something calmer, and to hopefully start a family.
  i have lived in huntsville, al for the last almost 7 years. i am married with 2 young kids. where i live public transit is not even an option. i am very isolated and rarely leave the house, other than to get groceries with the family, and occasionally an evening out with my husband.
  my vision has deteriouated a LOT since i had kids/gotten older -- not sure which had the biggest effect. i am not quite 29, yet was diagnosd, already with 20/200 at age 11. docs said it was stable at that, but is now worse than 20/400, and more importantly have noticed the loss of the central stuff tremendously. there is constantly "white spots" in the way. but thats a topic for another day.
  i am going back to school in the fall to get a hopefully more useful degree. this time around i want to be an accountant.
  i'm generally unhappy and think my vision, or lack thereof, is a much larger caudr than i was ever willing to admit. not being able to get around on my own, and not working, has made it almost entirely impossbile to make friends. my family, other than my dad, all live in california still.
  i'm thinking that i want to look for work and relocate to a bigger city with public transit when i get my degree and am ready to find a job. my husband doesnt really understand this.
  if anyone would be willing to share where they live, or how they manage to get around, i would really appreciate it. my email address is suziekewxo@yahoo.com id that makes it any easier.
  thanks,
  suzie
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• Sking
• Posted: 2009-04-08 18:33:30 By Phyllis G
• Hi everyone, I have not been on for a while but thought I would let you know that my son is doing well, he started sking last year, and this year made it to the black slopes winning a bronze medal. He loves it and Stargardts does not seem to bother him at all when he is sking. We have a great pair of goggles and a good helmet. I was so worried when we first found out but so far he just keeps surprising us, and more importantly he is having fun. Phyl
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• Magnifier Mouse for Low Vision
• Posted: 2009-03-12 23:16:10 By Mike C
• Hello, I am 26 years old and was diagnosed with Stargardt's Disease when I was 7 years old. I live a normal life and have a career as a Multimedia Developer at a college in Calgary, Alberta, Canada.
  
  I work on the computer all day, and spend a lot of time on the computer in my spare time, and I have found a mouse that has made everything soo much easier for me. There is a whole line of Microsoft mice that use a software driver called Intelipoint. Any of the Microsoft mice that have the magnify feature listed on the features will use this. There is a small button on the side of the mouse that you can click to instantly bring up a re-sizable and adjustable on-screen magnifier.
  
  I just wanted to share it with everyone else who has low vision since it has been a life saver for me. I find that I am able to work on the computer for much longer and read vast amounts of text without straining my eyes or being 2 inches away from the screen.
  
  I have just posted a video on YouTube demonstrating how it works.
  
  http://www.youtube.com/watch?v=eVCUWcMV8FI
  
  I hope that helps some people.
  
  Thanks
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• Congratulations to Scott MacIntyre!
• Posted: 2009-03-05 11:51:25 By Kristine A
• Congratulations to Scott MacIntyre! His dynamic performance on Tuesday night secured him a place in the Top 12 in American Idol!
  
  Thank you to everyone who voted for Scott. Be sure to tune in again next Tuesday at 8:00 p.m. EST and cast your vote for Scott as he performs in the next round. With FFB’s support, Scott MacIntyre is destined to be the next American Idol!
  
  Millions dream of making it to the final rounds of American Idol but for Scott MacIntyre, the dream has become reality. Born with severe vision loss from Leber congenital amaurosis (LCA), Scott is an incredibly gifted musical performer who has made it to the Top 12 on American Idol. With his remarkable talent, Scott is bound to make it far in the competition, and we need you to support him as he shoots his way to the top!
  
  An Arizona State University graduate, a Marshall scholar, and a Fulbright scholar, Scott learned to play the piano at the age of three. His piano professor, Walter Cosand, said, "He's always been able to do what everyone else could do and many things no one else could do. A lot of things he does are very remarkable, even for someone without a disability."
  
  Scott also has a sister, Katelyn, who has lost her vision to LCA. With their brother Todd, the three siblings have made a splash performing as the MacIntyre Family Singers. Scott even shared his talents with the FFB family when he performed at the opening luncheon of the 1998 VISIONS Conference in Chicago.
  
  Simon, Paula, Randy and Kara have brought him this far; now it’s up to us to make Scott MacIntyre the next American Idol! Scott will be performing live on Tuesday, March 10, as one of the Top 12 contestants to continue to compete. Voting is free, so be sure to vote for Scott!
  
  Stay tuned to the Foundation Fighting Blindness Web site for more information about Scott’s progress and how your votes can help him reach the top and raise awareness of retinal degenerative diseases across the country.
  
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• My son is recently diagnosed with Stargardt's disease
• Posted: 2009-03-04 14:32:04 By Sue Y
• We are just inform my son has Stargardt's disease last month. We are very worry how fast his vision would deteriorate. Will the progression become stable at some point? his corrected vision is 20/140 now. We are very concern how this is going to impact him and his career later in life. He is only 14 years old. Is the a special diet or special filter eyeglasses that can slow down the progression of the disease? Should he take Lutein and avoid Vitamin A rich food in his diet?
  
  Please reply
  Sincerely,
  Sue from Canada
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• My son is recently diagnosed with Stargardt's disease
• Posted: 2009-03-04 13:29:46 By Sue Y
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• Newly Diagnosed
• Posted: 2009-03-04 00:36:15 By Robbin M
• My 20 Year old daughter was just diagnosed with Stargardt's. My 21 year old son was diagnosed 9 years ago. We just knew she had escaped this disease. I need to find some people her age or older to encourage her. Her brother is great support but she feels he's just telling her things so she wont fall apart. She needs some friends that have this to communicate with.
  robbinfaith
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• Amazon Kindle 2
• Posted: 2009-02-11 15:00:33 By RICK C
• Did anyone hear that the new Amazon Kindle 2 wireless reading device will now come witha read to me feature which will read blogs, newspapers, magazines and books to you aloud. Great stuff!!
  God Bless!
  RIck C
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• IOL-VIP system
• Posted: 2009-02-10 18:10:32 By Edgar d
• Hi,
  
  I found a new treatment on the internet and i wonder if sombody know about it and if it is efecttive.
  
  You can find this treatment in www.iolvip.co.uk
  
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• catching up/checking in
• Posted: 2009-02-03 15:25:50 By michelle g
• Hey all. Haven't been on here in so long I had to re-register.
  I saw a couple posts on the StarGen. good news. any other news?
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• Message board question
• Posted: 2009-01-23 00:18:40 By Brian C
• Does anyone know how these message boards work? When somebody responds to a posting, does it go directly to who your responding to? Or does it get published for everyone to see?
  
  Thanks
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• Vision aid suggestion
• Posted: 2009-01-22 17:42:56 By tim b
• Hi, I need help. My daughter who was recently diagnosed with startgardts can no longer see reds. Unfortunately the software she uses at work has a lot of red in it as far as characters and such so she can not see what is writen or typed on the screen. Is there any low vision aid that she can use to change the color of the fonts so she can resd it other then asking the system admin. to change it? thanks
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• It's been a while...
• Posted: 2009-01-15 11:41:00 By Richie S
• It has been a long time since I have posted anything (years). I was diagnosed with SD at age 17 after driving for a year or so. I am 39 now. It was hard to give up driving, but I take the city bus now to work, along with my bicycle. I also get rides from friends and family (and I do a lot of walking).
  
  My eyesight started going bad to worse the middle of my junior year in high school. I finished high school and then finished college (the 5 year plan). I live in Austin, Texas. I work for the school district doing computer support and programming. I use ZoomText to enlarge my computer screen. I also use a CCTV to enlarge printed materials. I also have an 8X handheld round magnifier fo on the go.
  
  I go through the same things as what other users post. I cannot see details, but can get around fine. People don’t get it. I look like I can see fine, and I don’t wear glasses. They wonder why I need help with restaurant menus or airport signs, or other things like that. I usually say I forgot my glasses because that is the easiest quickest least painful excuse.
  
  Anyway, I have years of experience and would gladly share my stories or answer questions for those who need some support. You can email me at jerryrsanders@yahoo.com. If anyone lives in Austin, I’d love to meet someone else with Stargardt’s Disease.
  
  Richie Sanders
  
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• newly diagnosed
• Posted: 2009-01-07 00:46:41 By tim b
• Hi,
  My daughter is 26 and just diagnosed with stargarts. She is finishing college with a degree in nursing and wants to do pediactric intensive care. Her vison corrected is 20/200 both eyes. Natually she is devistated and feels she can no long pursue her dream of being a PICU nurse. I have many question but as this is what seems to bother her the most I was hoping that if anyone here was or knows any nurses with SD that they may be able to share some stories with me and/or visual aid to help my daughter achieve her goals.
  Ok next I need suggestions for eye protection. Any particular sunglasses I have read they should be 100% UVA and UVB plus that they shuch be blue blockers. As a young women she is naturally concerned with fashion are there any recommendations?
  Vitiams I saw in one post Maxi Vision Occular was mantioned as a supplement are thier any other recommendations?
  Microcurrent stimulation, I have seen this advertised does anyone have any knowlege of this?
  Thank you very much.
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• Magnifier Recommendations?
• Posted: 2008-12-05 12:02:09 By Matthew W
• I'm 28 and my right eye is 20/200 right now and my left will probably be there soon (still have a small spot where I can see 20/20ish) so I've been starting to look into magnifiers.
  
  Does anyone have any recommendations for distance monoculars or TV glasses or close up glasses.
  
  Thanks in advance for any help.
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• STARGEN GENES THERAPY WILL BEGIN IN 2009.
• Posted: 2008-11-28 05:09:01 By Muhammad A
• Dear All.
  Encouraging news received from the Foundation Fighting Blindness details are as under:-
  
  We are actually hoping to begin clinical trials for Stargardt sometime next year. The email you received from Oxford BioMedica says that they hope to move toward clinical studies over the next 2 years. That doesn't mean it will take another 2 years. It's just a cushion because no one can make the prediction of when clinical trials will start. The Foundation is hopeful that it will be before then.
  
  Please continue to visit our website to enjoy all that it offers.
  
  Best Regards.
  
  
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