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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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• High school students calculator
• Posted: 2007-08-21 22:57:00 By monica g
• I have a daughter who is starting grade 10 and her math teacher requires all students to use TI89 calculator. The problem is that the keys are too small for her to see well. Also the characters in the display are too small. Any suggestions or ideas are more than wellcome. She uses the "Amigo" but it doesn't help too much. Does anybody know a calculator for kids with Stargadt with similar specifications as TI89.
  Mónica
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• Nolan's new game
• Posted: 2007-08-17 08:47:44 By Larry R
• Dr. Nolan, who discovered the echo treatment for SD, is now in the anti-aging game. If you click on about us at the top, you'll see it's him.
  
  http://www.aestheticlasersolutions.com/Pro-anti.htm
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• Teaching with Stargardt's
• Posted: 2007-08-06 15:07:15 By Andrew T
• My fiance is an elementary ed major and is set to begin her student teaching this fall. She was diagnosed last January and her vision is currently somewhere between 20/40 and 20/60. Are there any other teachers with Stargardt's on this board? If so, what are some of techniques/tips that can be used for helping cope with Stargardt's on the job? Any advise would be extremely helpful, as she having a lot of anxiety about her future vision and its affect on her career.
  
  Thanks,
  Andrew
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• I'm Not Sure
• Posted: 2007-08-02 20:05:23 By latanya s
• Hello everyone,
  Today, both my 17 and 15 year olds were diagnosed with having stargardts disease. It was a lon process. We went to a retinal specialist in Charlotte NC (Where we live) at 8:00 am this moring and we did not leave the place until 2:00 pm. Now that I know what my children have how do I cope? right now all that I can do is cry and pray to God for a cure. My 17 year old had hopes of becoming a doctor. Should he continue with his dream knowing that his sight is going to be depleted some day? I'm at a total lost and I need some help. I don't know where to begin. My other child, the 15 year is now legally blind. How does the school accomodate her and what do I need to do? This was a blow to me today and I'm trying to remain strong for my kids but when I shut my door in the room I just break down. please send me your thoughts and some direction.
  Thanks
  La Tanya
  Mother of 2 kids with stargardts
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• omega 3 simpson brand
• Posted: 2007-08-01 12:35:47 By Cheryl T
• At BK they had a coupon for omega 3 berry squirts. It may taste better for the young ones
  promo code BK700 buy4 get $7 off+free ship
  BK350 $3.5 +1/2 off shipping BUY2
  st-hills dot com
  Cheryl
  
  
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