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• Genetic testing and Stargardts
• Posted: 2011-01-20 20:45:41 By lauren p
• My husband just got negative results from a genetic test looking for Stargardts. We are devastated since we've been holding out hope that the ACT stem cell treatment will one day be successful and applicable to him. My husband's doctor is still convinced he has Stargardts despite the genetic test results. I'm wondering if anyone knows whether or not the trials are being done only on people who test positive genetically and whether or not it would be available to those without positive genetic "proof" they have the condition. Thank you
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• I don't know how to help.
• Posted: 2010-11-20 11:03:29 By Brandy W
• My husband was diagnosed with this disease at age 5 and he is 29. He tells me all the time he thinks his vision is getting worse but he was just at the eye dr. He has trouble seeing the scores of games on our 42 in TV and reading signs at night. I know the rflection thing off the signs may be causing that problem, but I don't know what to tell him. He asked me if I would still love him it he was blind, and it broke my heart.I've suggested that he go to a specialist and he tells me that is dr. is good enough. I think his dr may be very old and I think he needs a new age opinion. Any suggestion or information?
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• Accutane and Stargardt's
• Posted: 2010-09-30 22:34:00 By Cindy G
• Has anyone heard of an absolute contraindication for the acne med Accutane (or its generics) with patients who have Stargardt's? Our son has been on the med for a month and today when updating records with the low vision specialist, this issue was raised. Online searches are less than helpful but indicate a positive affect in the lab with mice. Visiting the dermatologist tomorrow.
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• I got an idea..
• Posted: 2010-09-06 23:15:54 By jagat j
• We all know the usual problem in using a cctv or a hand held digital magnifier. As these devices work on lcd/led/crt technology so if they are used for a long period of time for reading a book or something then they cause headches and strain . So i was exploring the new Amazon kindle ebook reader which uses Eink technology for its display . This display causes no strain to eyes and is equavalent to reading an actual paper . So i was wondering why doesnt a company manufactures device similar to digital magnifier but having an Eink display instead of the usual LED/LCD/CRT display . This device will be very useful for visually impaired as it would enable a person to magnify the things just like what a cctv or digital magnifier does and would display the magnified things on the eink screen for strain free viewing. If you know any low vision aid manufacturar then do take the initiative to pass on this idea to him/her .
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• Inspiration
• Posted: 2010-07-09 15:43:12 By F
• on HBTV(design & home improvement channel) I seen this show about a designer who has Stargardt's, I hope this gives you some inspiration to go for your drams & never give up!!!
  ------------------------------------------------
  Monica is a full-time mother of four from Raleigh, North Carolina. Although Monica is legally blind, she is determined to test her self-taught design skills in a real-world situation. Her challenge is to completely redesign the Schwartz family's large, but mostly empty living room. This young couple would like a beachy, asian-inspired space with plenty of seating for entertaining. Expert mentor Vern Yip is on hand to answer questions, but Monica's making all of the decisions. Will her vision impairment be her biggest obstacle, or will it be budget or time constraints?
  
  To watch Vid. Link below...
  http://www.hgtv.com/videos/creative-vision/49441.html
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• HELP NURSING SCHOOL
• Posted: 2010-05-25 23:45:45 By Toya H
• Hello to all,
  I’m a 23yr old as many other's here I have stargardt's and I am very excited to go into the medical field as I have already graduated as a medical assistant without any cc tv's, enlarged print to help me out, I've learned to study longer and harder..put the book as close as possible to cope with this issue and I have successfully completed the course with a 4.0 G.P.A over-all although this was a very hard task to do and being dubbed “legally blind” doctor's are amazed BUT, nursing school can be very hard and I'd def. like to talk, email etc. anyone that can help me with any information as far as getting tools to help me along this journey or for mental support..I am scared that my teacher's aren't going to give me the time needed or the textbook’s larger..Val's, needles, charting sheets can be small and if you're wondering how I got threw my medical assistant course without these extra things I can truely say 'FAITH' and Determination !
  
  Thanks, For reading
  *Keeping fingers crossed for a cure*
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• Vitamins!
• Posted: 2010-05-12 17:09:33 By Kendra D
• Does anyone know of any good multi-vitamins without vitamin A? I can't find any. If not, what's your approach to obtaining the needed nutrients?
  
  
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• RP Social
• Posted: 2010-05-05 21:43:37 By Maria P
• Hello everyone,
  
  Here is the info for the 2010 RP Social open to all with retinal degeneration or other blindness as well as Usher. For info go to: www.rpsocial2010.com It is a great way to meet others who are dealing with Retinal disorders or Usher. I am looking forward to going to my first social.
  Hope to see you tehre!
  Marisa
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• Sirion Therapeutics Trials
• Posted: 2010-05-05 21:14:24 By Geoff M
• Hi folks, just wondering if anyone has information about the trials Sirion was conducting for Fenretinde. Phase two trials showed positive results last year but since then no news of further trials and the product is no longer appearing on their website. Can anyone provide an update, thanks
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• Stargen trials
• Posted: 2010-04-22 21:46:57 By Colleen P
• Everything I read about Stargen sounds like they are hopeful it will provide "rescue" to the retina, but not restore vision. The mice studies though, are said to have restored vision for more than 200 days with a single dose. Can anyone direct me to more information about this?
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• Great Article about Vision Loss
• Posted: 2010-04-09 12:27:54 By James B
• I found this article about living with vision loss that is really insightful and encouraging. You may want to check it out.
  
  www.associatedcontent.com/article/2860558/living_with_vision_loss.html
  
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• Monocular
• Posted: 2010-04-01 15:18:49 By Casey F
• Does anyone use a monocular that they really like? I am looking for something small to keep in my purse or pocket with a good bit of magnification. I would like to use it at the park with my kids. They are getting too old for me to be on top of them all the time, but I still want to keep a close eye on them.
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• Macula Dimpling?
• Posted: 2010-04-01 12:59:44 By Robyn M
• My daughter saw the eye doctor this week. He said that he macula had signs of "dimpling" but no hole or tears. She seems to have early signs of RP as well. Is macula damage associated with Stargardts? He has not said that she has Stargardts but I'm wondering if the macula damage may suggest that?
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• Coping with not being able to drive
• Posted: 2010-03-17 10:12:11 By Susan P
• Hello all,, it's been a while since I have been on this site. My son is 16 and was diagnosed at 11. All of his friends are getting their permits to drive and he is not coping well with not being able to do the same. We tried to get the bioptics but his vision is to bad. He is really starting to get depressed and I need to pull him out of this. Does anyone have any suggestions?
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• ACT gets FDA approval...
• Posted: 2010-03-15 16:50:20 By Krzysztof W
• Check out the link, some very good news http://www.advancedcell.com/press-release/advanced-cell-technologys-rpe-cells-granted-orphan-drug-status-from-fda-for-treatment-of-stargardts-macular-dystrophy
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• does it get worse any way?
• Posted: 2010-03-10 21:05:20 By Anna M
• hey my name is anna and i am 19 years old with stargardts. I found out i had it in the 6th grade after 2 years of daoctors saying i was fine that i probably just wanted glasses. 6 doctors later i found out i had stargardts. Im doing good with it and i am very grateful for the vision i have. My doctor told me i have stopped at the stage i am and has said this for the past 5 years. so i was just wondering if any of you could say that though you got worse did you stop and stay the same? i would really appreciate it if someone could tell me there experience because i feel like my eyes are blurred a little more and am hoping that it is my near sightedness anyway if any one could help or if any one would be ok with talking to me i would really really appreciate it thanks Anna
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• Insight
• Posted: 2010-03-01 03:21:43 By Ali B
• Hi, My name is Ali and I'm 21 yrs. old. I'm new to this lol. I've had stargardts since i was 9 and have adapted well to the change. However, I've always been ashamed of being blind and have hid this fact of my blindness from almost everyone except my closest friends and family. I'm growing tired of hiding this part of me and am wanting so badly to get this "secret" out. I terrified of what people will say and have no clue how to even tell anyone.
  Is there anyone who has some thought on this???
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• Stargardt's and Skin Conditions
• Posted: 2010-02-26 14:01:52 By David J
• I am 46 years old and was diagnosed with Stargardt's about 20 years ago. All my life, I have also suffered from very sensitive skin. As a child, I would get blisters on my feet very easily. Even now, my skin blisters very easily with just a little bit of moisture or friction. I was wondering if anyone else with Stargardt's has extra sensitive skin? Maybe the blistering of the skin is related to the "blistering" of the retina?
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• Genetics
• Posted: 2010-02-03 09:59:02 By Jeri P
• Does anyone have a background in genetics? I am trying to figure out what might happen if someone with Stargardt's Disease had a biological child with someone who has Retinitis Pigmentosa.
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• iPad
• Posted: 2010-01-31 02:38:09 By
• I live in Australia. My 15 year old daughter has Stargardts. She is now legally blind with acuity at less than 6/60. Has anyone that is vision impaired compared the various technology like Kindle and the iPad to determine whether they are suitable for someone like my daughter. She would dearly love to be able to read. Can these devices be magnified?
  Yvonne
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• LMI
• Posted: 2010-01-29 15:17:57 By
• I have recently heard about some magnification implants that could help some people with retinal diseases. I am wondering if anyone has heard of either of these or had one of them implanted?
  LMI
  
  IOL-VIP
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• Stargen update?
• Posted: 2010-01-09 17:38:57 By Vivian N
• Can someone provide a status update on the Stargen project?
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• UV Blocking Contact Lenses
• Posted: 2010-01-08 20:40:03 By Kyle D
• Hey...has anyone been told to wear UV blocking contact lenses as a way to slow the progression of Stargardt's? There is a type, called Acuvue, which claims to be the best UV blocking lenses on the market. Seems like an obvious conclusion that SD patients should wear these...but no one has mentioned that to us.
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• Which cell phone do you use?
• Posted: 2010-01-07 03:10:31 By Brian C
• Hey Everyone,
  
  We obviously live in a society that has grown dependent on technology. Things like computers and cell phones have become part of our everyday lives. I wanted to ask all of those with an eye condition, what kind of cell phone do you use?
  
  For the most part, I don't really have too much of an issue with my cell phone but I do struggle with some of the basic features. Although I set my settings on the largest font size, I still have difficulty reading text messages and phone numbers. I really want to get an iphone, but have a hard time seeing the fonts on the screen.
  
  So does anyone have any suggestions?
  
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• New Windows 7 Accessibility Features
• Posted: 2009-12-15 11:41:59 By Andrew G
• FYI for anyone who hasn't upgraded to or used Windows 7 yet... Microsoft made some nice updates to the accessibility tools. Besides the typical magnifier that you've already used, it now has 2 other modes to choose from. One is a zoomed view of the entire screen which will shift to the location of your mouse. The other option is a simulation of a hand-held magnifier in which you can move your mouse around the screen with a boxed magnifier around it wherever you point.
  
  Of course, with each of these modes, you can adjust zoom, invert colors, and some other features.
  
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• clinical trial soon?
• Posted: 2009-12-07 12:39:55 By Larry R
• Advanced Cell Gets $2.8M
  Luke Timmerman 12/7/09
  
  Worcester, MA-based Advanced Cell Technology, the developer of human embryonic stem cell technology, has raised $2.77 million in financing from debt and options, according to a regulatory filing. Half of the financing arrived in mid-November, and the other half is due within 90 days of the original closing, according to the regulatory filing. Last month, the company filed an application with the FDA to start a clinical trial of a stem cell therapy for an eye disease called Stargardt’s Macular Dystrophy.
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• Adults with Stargardt's
• Posted: 2009-12-01 12:18:34 By Kathy L
• Hi,
  I was diagnosed with Stargard's a few months ago at the age of 50. I know most people find out before the age of 20. I'd like to connect with other people diagnosed later in life or even those that are now adults and hear their stories. Right now I have one eye at 20/200 and one at 20/40 and am wondering if there are other people who have one eye that stays seeing fairly well or if I should expect my "good eye" to progressively get worse also.
  I'd appreciate any advice people could pass onto me to help me adjust to my new situation.
  Thanks
  Kathy
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• Hello, does anyone know of a visually impaired person in the banking/finance field?
• Posted: 2009-11-07 09:16:28 By jan l
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• Inherited Macular Degeneration
• Posted: 2009-11-04 00:59:33 By Seth S
• Hi,
  
  My father has a form of Inherited Macular Degeneration known as Fundus Flavimaculatus with macular dystrophy (FFM). Fundus Flavimaculatus is similar to the more common form of Macular Degeneration known as Stargardt’s. I was wondering if anyone else has this disorder. I would like to learn more about the latest research and clinical trials, and also share his story. I know he is looking for people in a similar situation that he can connect with.
  
  Seth
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• Suggestions
• Posted: 2009-10-24 21:38:28 By
• Hi! I was diagnosed with Stargardt before I left for college 8 years ago, and the disability office was a huge help. I was able to graduate with a degree in English Lit, go to grad school, and become a Certified Vision Rehab Therapist. Here are some tips:
  
  Get a letter from the disability office describing her vision loss and classroom accommodations she'll need. *Give it to the professor on the first day of class if not before.
  
  Micro-cassette recorder for lectures.
  
  Large print and additional time testing.
  
  Screen magnification software like ZoomText or Lightning Express.
  
  Text-to speech device like the Victor Stream Reader-The disability office can scan textbooks onto a computer and download them to this device for her to listen to like an IPod.
  
  Clarity Deskmate Plus-This is a small laptop compatible CCTV that would let her take her own notes in class, magnify printed materials at her desk, and flip the camera out to zoom in on the board. It's expensive, but a Vocational Rehab Counselor at the disability office may be able to help.
  
  A videomagnifier (handheld CCTV)-One like the Oplelec Farview would let her magnify materials at her desk, then hold it up and zoom in on the board.
  
  Hope that helps!
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