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• New to site!
• Posted: 2007-11-01 22:29:57 By Jessica M
• Hey everyone! My name is Jessica, I am 27 and I was diagnosed with Stargardt's when I was 11. I am the only person in my family with this disease. I have a few questions to ask! I have read some about stargen, is it a cure or just a prevention to keep eye sight from getting worse? Why do some peoples eye sight stabelize at like 20/70 and others 20/400? Because that is a huge difference! I went to Johns Hopkins in 2003. The specialist told me he expected a cure within about 5-8 years. I hope to get a response from anyone! I just got on this site yesterday and I would like to find out as much info as I can. THANKS!!
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• Optomistic Future of Stem Cells
• Posted: 2007-10-31 15:06:47 By Kris W
• article out on the web today...
  http://money.cnn.com/2007/10/31/news/companies/stem_cells/
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• Size of Scotoma
• Posted: 2007-10-31 10:59:10 By Marie S
• Hello all - We went to the doctor yesterday with my 15 year old. Her vision remains fairly steady around 20/160, but when Dr. Sunness checked her with the SLO, it seemed like the blind spot had gotten bigger. Previously, she had some flecks around the spot, but it did not compromise her vision, but now it seems like she cannot see in that area. Is it typical for the blind spot to get bigger around for anyone on this board?
  
  Thanks.
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• Scientists Envision Growing Human Eyeballs
• Posted: 2007-10-25 14:43:36 By Eldie T
• http://www.livescience.com/health/071024-eye-switch.html
  ----------
  A genetic switch that gives tadpoles three eyes could allow stem-cell scientists to eventually grow human eyeballs or at least create replacement parts needed for repair jobs.
  
  If scientists could grow eyeballs from stem cells in the lab, the process would be a boon to individuals with damage to cells within the eye, including retinal disorders.
  
  "If you knew all the genes, and how to turn them on, that you needed to make an eye, you could start with very early embryonic cells and turn on all the right genes and grow an eye in a dish," said co-leader of the study Nicholas Dale, a neuroscientist at the University of Warwick in England.
  
  "What I think is the more realistic possibility is to make precursor cells for different bits of the eye, which could then be transplanted and differentiate in-situ to replace damage to the retina or the lens or iris," Dale told LiveScience.
  
  Scientists already had established the amphibian genes that initiate and direct eye development, which they refer to as Eye Field Transcription Factors (EFTFs). How these genes get activated in the right location at a certain time during development had been cloaked in mystery.
  
  The new study, detailed in the Oct. 25 issue of the journal Nature, suggests a nitrogen-bearing molecule sets off a series of steps that result in eye formation in frogs. The mechanism probably also applies to humans and other animals with eyes, the researchers say.
  
  Dale and University of Warwick developmental biologist Elizabeth Jones, along with colleagues, discovered the eye-switch while investigating how "ectoenzyme" molecules located on the external surface of cells contributed to the development of locomotion in the African clawed frog (Xenopus laevis). The biologists injected the molecules into frog embryos that comprised just eight cells.
  
  One of the ectoenzymes triggered wonky eye development. When added to cells that would eventually form the head, the resulting tadpole sported three eyes instead of two. An even stranger sight resulted when they injected the ectoenzyme into other developing body cells. The molecule caused an additional "ectopic" eye, leading to tadpoles with a spare peeper growing out of the side, abdomen or even along the tail.
  
  On a molecular level, the scientists say the enzyme converts a burst of the energy-carrying molecule ATP into ADP, which ultimately turns on the embryo's eye-making machinery.
  
  The researchers think the same mechanism for triggering eye development applies across a wide range of species, including us. Mutations to the human equivalent of this enzyme lead to severe head and eye defects in humans.
  ----------
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• can anyone relate?
• Posted: 2007-10-23 10:42:10 By suzie o
• i was diagnosed with stargardt's at age 11. at that time my vision was either 20/200 or 20/120. (i was told both by different specialists.) anyway, i could read regular print books and magazines with no aids, but i did have a pair of basic reading glasses that helped. of course i held everything close, and couldn't see the board at school, but a monocular helped with that. i could get around fine and do most "normal" activities without much trouble. doctors told me i was stable and my vision shouldn't get worse.
  i didn't notice much difference over the rest of school, with the exception that possibly sometime in college, i needed the reading glasses more to be able to read magazines and stuff.
  i had my first son at 24 and noticed a significant change after that. i had moved to a new state and new doctors, who told me i wasn't testing much different than i had been, but at that point i was somewhere in the 20/300's. i now cannot read regular print even with super thick special magnification glasses. i have to use a hand held magnifier of at least 12-14x in order to read anything, bills, recipes, directions on packages, letters, anything. i can't even read large print without the special glasses. i have trouble getting around more now, especially stairs, curbs, steps, etc. i think my depth perception is way off.
  i recently went back to a low vision center and now my vision is measuring at 20/400. I'm now told that it shouldn't get worse, but thats what they told me when it was about 20/200.
  i've noticed the blurry spots in the middle of my sight have gotten bigger and thicker it seems. i notice them getting in the way a lot more.
  i am 27 now, and a few weeks away from giving birth to my second child. i am getting worried that i could lose another significant amount of vision and things get even harder.
  it scares me becuz my vision has always been an obstacle, but nothing like it has become. i try to keep a positive attitude, but being a parent now is bringing up a lot more issues and concerns i am only starting to address.
  just wondering if anyone can relate to any of this. thanks.
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• portable cctv's
• Posted: 2007-10-23 10:15:31 By suzie o
• has anybody used any of the portable cctv's for reading or writing? any recommendations? i plan on using it both for reading, and for filling out forms, paying bills, that sort of thing. a full sized cctv is not really an option right now, but i've been trying to find out about the portable ones.
  any personal experiences would be the best help. thanks.
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• driving
• Posted: 2007-10-19 14:50:01 By T R
• Does anyone know if bio optic glasses are allowed in New York State? How bad does your vision have to be to need these? Thanks, Tonya
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• Unite for Sight
• Posted: 2007-10-16 01:04:45 By Chin S
• pls visit
  http://www.uniteforsight.org/
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• Stem Cells Treat. Stories-BBC
• Posted: 2007-10-09 09:04:21 By Chin S
• http://news.bbc.co.uk/2/hi/programmes/documentary_archive/7002784.stm
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• Echo therapy
• Posted: 2007-10-08 11:23:04 By Frances T
• Has amnone been treated for Stargardt's with ECHO therapy in Farmington, Ct.
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• microacupuncture
• Posted: 2007-10-06 20:49:11 By Angie P
• Has anyone heard about or tried microacupuncture. I am doing some research on it for my brother and have come across a few different doctors and clinics that use this method. I am interested in any input on clinics or doctors or the procedure that anyone might have. Thank you.
  
  Angie
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• DNA TESTING
• Posted: 2007-09-30 23:30:09 By EDWINA S
• ILL GET RIGHT TO THE POINT I WANT TO HAVE MY FOUR DAUGHTERS TESTED FOR SD BUT I DONT KNOW WHERE TO START THE RS I TOOK MY 5 YEAR OLD TO SAID THERE WAS PIGMENT CHANGE BUT HE COULD NOT BE SURE ALL WE COULD DO IS WAIT COME BACK IN 6 MONTHS I ASKED ABOUT DNA TESTING AND HE WENT ALL AROUND IT WITH NO ANSWERS WHAT KIND OF DR WOULD DO THIS TYPE OF TEST DOES ANYONE KNOW THANKS SO MUCH GOD BLESS EDWINA STOCKSTILL
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• Searching for dr.s in CA
• Posted: 2007-09-21 00:02:27 By Michelle G
• I was diagnosed with Stargardt's when I was 4 years old. My vision loss has been very slow in progression and it only affects me at night or times of extreme strain/stress (so far). I am now 22 and a law student in San Francisco (but live in the East Bay).
  I was recently married and the negative side of that is that I now am off of my parents' medical insurance on my husband's. Now I have to find my own eye care, as my parents and former doctor are several hours south (and no, he doesn't know of any recommended dr.s up here).
  Should I go for a specialist? If so, where can I find one? What should I tell my new doctor?
  
  Thanks in advance :)
  
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• VES Autofocus??
• Posted: 2007-09-19 00:25:55 By Kris W
• Has anyone tried them yet and if so what do you think?
  
  thanks
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• Older SD Patient Looking For Help
• Posted: 2007-09-18 09:32:14 By Darren B
• Hi Everyone.
  
  I am a 47 year older professional who had SD onset later in life (at age 35). My SD was very stable for the past 4 years and I have been managing my career and life fairly well-including driving. Yesterday I got some news that my eye sight had dropped to about 20/200. I had this drop suddenly over the past 3-4 months. My specialist has voiced concerns on my driving. I am using a voice activated GPS as well as limiting my driving to daytime. I am using specialize color schemes for driving.
  
  Does anyone have any recommended sites, visual specials or thoughts for helping me find tools to help me maintain my driving ability.
  
  Many Thanks…DCB
  
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• Mom with questions
• Posted: 2007-09-13 01:06:21 By Jill W
• My son was diagnosed with SD 8 months ago at the age of 5 and I have a question I hope someone can answer for me.
  When my son was diagnosed back in January his vision was 20/100 with both eyes. After meeting with the retinal specialist we had hope that, because of very few, if any, "flakes" around the retina, his vision would not decrease very much.
  We returned just yesterday for his follow up appointment and as I had worried, his eye site had decreased dramatically. Because of my emotions running wild at the time I did not get where exactly his vision was reduced to and am awaiting the report from the doctor. But I can tell you that at his first appointment they thought that he may need a dome magnifier in the future to now finding out only a short time later that the dome magnifier as well as other magnification tools will not help and we will begin learning braille!
  After finding this out with the low vision specialist we saw his retinal doctor and he told us that he did not see much change from our first appointment! Again my mind was going in so many directions that I did not completely retain the reasoning my sons vision had decreased as much as it has with little or no change to his retina.
  If anyone has experienced this and can explain it to me I would be greatful. Any positive support is always welcome!!
  Thank you,
  Jill in Iowa
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• DOCTORS
• Posted: 2007-09-12 15:51:14 By EDWINA S
• HI I AM LOOKING FOR A DOCTOR FOR MY DAUGHTER SHE IS FIVE YEARS OLD WITH SD AND SHE NEED TO SEE A RS WE LIVE IN MS DOES ANYONE KNOW OF A DOCTOR NEAR US? WE HAVE ALREADY BEEN TO TWO DOSTORS AND THEY WANT TO SEND TO ANOTHER AND ANOTHER. ANY INFO WOULD BE A GOD SENT. GOD BLESS YOU ALL EDWINA STOCKSTILL
  
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• New Driver
• Posted: 2007-09-12 14:39:38 By Cheryl T
• I'm excited and nervous. I got a go ahead from my low vision DR. He said he would authorize me to get a restricted drivers license, driving only during daylight and in good weather
  HOW AWESOME WOULD THAT BE!
  I hope this goes OK --I WOULD BE SO SIKED!
  I have an appointment with him next week and I will see from there
  Just needed to vent
  Thanks!
  Cheryl 35yo hopefully student driver ;)
  
  
  
  
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• StarGen News
• Posted: 2007-09-10 23:26:13 By Chin S
• Dear All
  pls visit this site and see what we could do to accelarate availablity process of starGen treatment
  http://www.oxfordbiomedica.co.uk/stargen.htm
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• Advice
• Posted: 2007-09-10 07:45:15 By Lori V
• I am new to my area, South Bend IN, and really need to find a RS! I can tell my Stargardts is progressing. Does anyone know a good aggressive retinal specialist? Maybe in Chicago?
  Thanks,
  Lori V.
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• Large Print French English Dictionary
• Posted: 2007-09-06 06:16:29 By Phyllis G
• Could anyone help me find a large Print French English Dictonary Please. We are having problems trying to find one here in Ireland. I have tried the UK but to no avial. My son has just started senior school and is in need of one badly. Phyl
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• Large Print French English Dictionary
• Posted: 2007-09-06 06:16:23 By Phyllis G
• Could anyone help me find a large Print French English Dictonary Please. We are having problems trying to find one here in Ireland. I have tried the UK but to no avial. My son has just started senior school and is in need of one badly. Phyl
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• Driving
• Posted: 2007-08-31 12:05:43 By jessica m
• Hello everyone
  My name is Jessica and I am 24 years old I was diagnosed with stargaredt when I was 21. I stop driving immediately because I live in Florida and they said I could no longer drive. I spoke to the eye doctor yesterday and joking around I said hey if people don't believe I’m blind than get in the car with me lol. Well than he replied actually you can in 20 different states with TELESCOPIC GLASSES or bionic eye.
  What stats can you drive with this?
  Because if that’s the case I’m moving lol
  soo if anyone has any idea of what states it is let me know pleasse
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• myspace anyone?
• Posted: 2007-08-29 23:13:51 By Kris W
• anyone have myspace? if so whats your address...
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• learning to deal
• Posted: 2007-08-29 12:25:13 By Dianne A
• Hey everyone,
  I was so happy to find this chat room.I've read everything there is to know about this disease since being diagnosed last year.I'm 39 and when I found out I was devastated.I agree with some of you who say it's like looking through a screen door.I have no blind spots.The only reason I saw my optometrist was because of extreme sensitivity to light and a bit of distortion.I now notice I have a harder time seeing in dim light.Even during the day if a car goes by and they wave i sometimes can't see who it is.It's sometimes frustrating as I know this will progress further.
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• FREE Work at Home Info pack and Job Finder(11925)
• Posted: 2007-08-28 19:52:41 By yameen k
• Are you looking to work from home but not sure which program is best for you?
  Visit us today and receive your FREE Work at Home Info Pack and Job Finder.
  We will help you find your dream job today!
  (http://www.typeinternational.com/affil/ti11925.htm)
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• MY KIDS
• Posted: 2007-08-24 13:46:11 By IRENE Z
• HI YOU ALL CAN YOU PLEASE HELP WITH ANY SUGGESTIONS ON THIS DISEASE OF STARGARDT'S
  
  
  THANKS
  IRENE
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• MY KIDS
• Posted: 2007-08-24 13:46:01 By IRENE Z
• HI YOU ALL CAN YOU PLEASE HELP WITH ANY SUGGESTIONS ON THIS DISEASE OF STARGARDT'S
  
  
  THANKS
  IRENE
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• Trying to help my uncle...
• Posted: 2007-08-23 16:57:10 By Christine P
• I am writing today because I'm desperate to help my favorite uncle (by marriage) who was diagnosed at age 61 with SD (15 months ago). The problem is, my uncle lives in Berlin and he and his daughters are wondering if a) his diagnosis can possibly be correct, since everything they read online suggests that SD is a juvenile disease that is somehow inherited, and b) if there are trials, treatments, or procedures happening anywhere else in the world that might be of some help. I am very sad for my uncle, Rich (it's easier than his actual name), as well. When I saw him just before the diagnosis last year, he seemed just as he had been my whole life. When I saw him in June of this year, everything had changed. He can no longer drive. On a very good day, he can sometimes read for 20 minutes out of his left eye, with a direct little flashlight on the print and some magnification. Rich has almost given up on the computer completely, and nearly stepped in front of oncoming traffic several times while giving me a walking-tour of the city. He avoids the grocery store because he can't tell the products apart, and when I asked what color Crocs he wanted me to bring him, he said it didn't matter, since he wouldn't be able to see the color anyway. He wears the amber glasses that block the UV rays and the blue rays. Otherwise, he has been told there is nothing that can be done. With as fast as his vision has failed in 12 months, we are all afraid that he might be blind soon, even though we've read that that shouldn't happen. But, the doctor who diagnosed him also didn't think his vision would deteriorate very quickly, because he didn't even expect to see Rich back for 2 years! I was hoping the StarGen study through Oxford BioMedica might have gotten underway by now, but it doesn't look like it. Does anyone know of anything that might be helpful? You all seem so positive and supportive; I'm hoping that, if my uncle can get some computer modifications, maybe he would be willing to join in a forum like this. Thanks for any thoughts!!!
  
  Christie
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• Driving
• Posted: 2007-08-21 23:59:53 By amanda r
• I read a message from 2003 that Pennsylvania doesnt allow bioptic lens driving does anyone know if they have changed that now for 2007.
  thank you
  san
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