Page 6 of 8.

<< < 1 2 3 4 5 6 7 8 > >>

Please login to post a new message.

• Retina Detachment with SD
• Posted: 2008-01-23 22:56:45 By Chin S
• Dear al
  dou you know anything/ anyone about retina detachment with related to Stargardts patients? what were the symptoms? What would be the treatment and after effects any significant vision loss etc,? pls write to me, cse0402@gmail.com
  
  detachment
• View Full Thread

• screen magnifier
• Posted: 2008-01-23 14:11:05 By Larry R
• For a number of years, I used ZoomText 8 with a Windows XP machine. It ran pretty well although occasionally had some problems with IE Now i upgraded to a Vista machine (and got the free trial of ZoomText 9) and I'm finding it slows down my machine dramatically. Is there any good alternative to ZoomText? (I don't need the reader)
  
  thanks
  
  Larry
• View Full Thread

• Hopless
• Posted: 2008-01-20 23:59:17 By Yung C
• Dear all:
  I have a 5 years old son, he just is find out Fundi: BE Macular RPE mottling with slight surrounding ¡§sheen¡¨, vessels normal, peripheral retinal OK under GA by a eye doctor, the doctor said there is no treatments and will be loss his 90% vision in this few years. Nothing to do. We are both very sad and desperate!!!!
  We are hopless and don't know how to do now.
  We are waiting my son loss his vision and can do nothing for him? He is just five years old, the docetor said he just has 60% normal vision now.
  Please give any idea for us! Thanks
• View Full Thread

• All new to me
• Posted: 2008-01-17 20:43:00 By Janelle G
• I just turned 21 and i was diagosed with this disease last winter on my 20th birthday. I am frustrated and scared having this disease. My blind spots are getting bigger in my right eye as shown by the microperimter tests and that is depressing. I have stopped driving at night, and only drive in good weather during the day on familar roads. I had to stop playing softball at college because it is no longer dafe for me, i was a pitcher and would have been the only returning pitcher this year... I am still helping the team, i am now like their pitching coach, i got an internship with the head coach so that is good! I get really upset when i think about my future and not bweing able to drive my kinds places at night and maybe even at all... and how it will affect my ability to tget a job in the real world and get there and back everyday. I know that normally you never lose all vision with this disease it is just central, but that is stil too much to lose to still be able to function normally, right? Please let me know what you think and if you have any advise or uplifyting stories, or if you are experincing anything i jusyt mentioned and can ensure me i can get through it .. that would be really great!
  Thanks,
  Janelle
• View Full Thread

• microacupuncture
• Posted: 2008-01-16 15:44:38 By Angie P
• Has anyone out there been to any of the microacupuncture clinics around the country. And if so what can you tell me about them?
  
  Angie
• View Full Thread

• accomidations for school work
• Posted: 2008-01-13 14:57:29 By Paige R
• I have a few questions to parents of SD kids out there.
  
  I am curious about what kind of accomidations that the school/county/state makes for your child. I just read the post from the person in New Jersey. It sounded like the state paid for the student to see a low vision specialist every year.
  
  Do they provide enlargemts, such as handouts?
  
  Do they provide CCTV at school or home?
  
  Do they reduce the amount of homework?
  
  Do they provide a classroom assistant?
  
  Anything else you can include would be helpful.
  
  Thanks for your time!
  
  Paige
• View Full Thread

• The London Project
• Posted: 2008-01-11 10:50:58 By Barry T
• The London Project to Cure Blindness has, at last, updated its website. Well worth a look. www.thelondonproject.org.uk
  
  Barry.
• View Full Thread

• My 20 year old daughter
• Posted: 2008-01-11 00:02:34 By Linda S
• Hello all! Just wanted to introduce myself because I am new to the message boards. My name is Linda and my 20 year old daughter was recently diagnosed with Stargardt's disease. After visits to 3 different doctors, I finally took her to the Moran Eye Center in Salt Lake City. They were able to let us know what it was, as she was having a real hard time just not knowing what was causing her vision loss. I would like to hear from anyone that could give me any information about how long it took for vision to decrease once the diagnosis was made. She is about 20/40 in both eyes with central vision loss, color vision loss and has such a hard time with contrast and difficulty at night/dim lighting right now. I realize that everyone is different but we have no idea what to expect and the doctor said that everyone is different so he would not say. I just wonder if it is months?? or years?? Please drop me a message if anyone has a couple minutes. Any info would be very appreciated.
  Thanks!
  
• View Full Thread

• NEW NEED ADVICE
• Posted: 2008-01-10 12:52:14 By Carol C
• I am a 64 year old woman, and had a diagoses of dry mac for 3 years. I have a new retina doctor and after a yearly check, wants to do some testing, she said she doesn't think I have dry mac. She said that SD mimics dry mac. Does anyone else have this disease at my age?
• View Full Thread

• New to the forum
• Posted: 2008-01-08 12:51:37 By Elizabeth M
• It just occured to me that after jumping in and repsonding to messages that I never introduced myself.
  My name is Liz. I am married with two boys, Jarred who is 10 and just diagnosed with SD, and Austin who is 7. We live in Oklahoma and spend the majority of our free time racing quads. When we are not racing our boys play baseball and wrestle, and Jarred plays football.
  Hope to get to know all of you and share helpful information together!
  Liz
• View Full Thread

• Omega 3 Fish Oil
• Posted: 2008-01-05 18:10:55 By Angie P
• What is the recommended dose of Omega 3 Fish Oil for people with Stargardts?
  
  thanks
• View Full Thread

• Any info would be of help
• Posted: 2008-01-02 01:56:06 By Christy P
• My son was dignosed in 2003, but i didnt find out what it was that he had until a few months ago. This year was the first they decided he needed transitional lens for the sensitivity to the light. He is already red/green color blind. So far he has progressed slowly, but from what i have read that can change. Is there anything i can do to help him prepare with school and such? I hear there is special books that they can give him with larger print etc... How would i go about doing that? Any help would be great.
  
  Thanks
• View Full Thread

• Merry Christmas
• Posted: 2007-12-17 18:00:53 By Phyllis G
• Hi everyone, just a small note to wish you all a very Happy Christmas, and to thank everyone for being so helpfull and supportive to me this year. God bless you all in 2008. Phyl. Dublin Ireland.
• View Full Thread

• stem cell hope
• Posted: 2007-12-11 10:32:08 By Janet S
• I was sent this via email,
  It is exciting.
  stem cells may regrow the retina,
  Now we just to figure out how to fix the underlying cause, so that they can do it.
  
  ...AMD. Retinal pigment epithelial (RPE) stem cells transplantation. "… patients were able to read, cycle and use a computer. By 2011, we will make it a 45-minute out patient operation."
  
  Posted on December 8th, 2007 by info@sujanani.com
  Could an out-patient surgical procedure for cure of age-related macular degeneration (AMD) with stem cells transfer become commonplace in the next decade?
  
  During a recent visit to discuss the possibility of conducting human trials of retinal stem cell transplants in India, Professor Pete Coffey, from University College London (UCL) Institute of Ophthalmology, London, United Kingdom; reportedly told the Times of India:
  “… some cases, the transplants were so successful that the patients were able to read, cycle and use a computer. By 2011, we will make it a 45-minute out patient operation.“
  
• View Full Thread

• Update on treatments and cures
• Posted: 2007-12-07 12:42:10 By Mindy L
• Hi Everyone,
  
  This message is from Dr. Rando Allikmets - Columbia University - he was one of the original doctors who discovered the ABCR gene, which is responsible for Stargardts.
  
  We have been pushing the gene therapy project, but the expectations usually run way ahead of the reality. There was a discussion of a
  Phase I trial starting next year, but in my honest opinion it is still a little further down the road. In addition, the Phase I trials
  usually involve adults with very advanced disease, where the efficacy is not evaluated and/or even expected, and focus mainly on safety issues.
  
  There are other possible treatments being investigated, such as small molecule approaches limiting vitamin A uptake. Since these are much
  less invasive, they may be available faster. Tim Schoen should be abreast of all these developments; another person at FFB who definitely knows is Steve Rose.
  
  We are continuing our efforts and hope to get to a meaningful treatment soon.
  
  Warm regards,
  Rando
  
  
• View Full Thread

• Thank all so much
• Posted: 2007-12-05 13:53:43 By carmen C
• I just wanted to say thank you very much for all the info and advice. you guys are wonderull thank you. he is still having a hard time with all of this but only time will tell what he will want to do with his lif. now that it is going in a hole nother direction.
• View Full Thread

• Thank all so much
• Posted: 2007-12-05 13:53:39 By carmen C
• I just wanted to say thank you very much for all the info and advice. you guys are wonderull thank you. he is still having a hard time with all of this but only time will tell what he will want to do with his lif. now that it is going in a hole nother direction.
• View Full Thread

• Fenetiride
• Posted: 2007-12-04 17:35:58 By IDA A
• Hello to all
  
  Have you heard about Fenetiride medication being tested in human for stargardt and macular degeneration (dry)?
  Where is this taking place? Who has some other information?
  
  thanks
  Ida Andrea
• View Full Thread

• new to the website
• Posted: 2007-12-04 12:25:50 By megan w
• i have a 10 yr.old son who is going blind. he has stargarts. anyone with information or a similar issues, please contact me and we can share information..
• View Full Thread

• star gene
• Posted: 2007-12-03 15:32:50 By hessie k
• hi ,
  i was just wondering if anyone in here knew
  anything about it.i was so excited to here about it they are starting a trail this year in NY i sent my blood work in and was told i had both the gene and the disorder well i already knew that lol they said they would get back to me
  and they did a few month later i was told i was to old i am forty now and i don't think i will get any younger but maybe it will help someone in here or maybe a family member i hope it dose we all deserve a break .
  god bless you all
  hessie
• View Full Thread

• Anyone using a Mac?
• Posted: 2007-11-21 07:47:23 By Larry R
• I've been using a PC with Zoom Text for screen enlargement and sometimes TextAloud to read documents. I understand the mac has those functions are part of its OS. Is that correct? How well do they work?
  
  thanks
  
  Larry
• View Full Thread

• driving
• Posted: 2007-11-19 21:46:34 By rebecca w
• hi there my name is rebecca i was diagnosised at 18 with stargardts but have had it since i was about 12 i am now 20 and about to graduate college in a year or so. i was wondering if anyone has ever gotten there drivers license and if so how they went about doing so. i really want to start researching how i can do so sucsessfully so if anyone has any suggestions please contact me at becca_rose_wilson@mac.com
• View Full Thread

• Best PC Monitor
• Posted: 2007-11-19 20:07:42 By Casey C
• What PC Monitor do you all recommend for those with Stargardt's? I'm in front of a computer all day long and need a brighter and/or crisper monitor I believe. I don't think bigger will help. I just want to read faster! :)
• View Full Thread

• new to site
• Posted: 2007-11-18 09:50:41 By hessie k
• i was just wondering if anyone ever went in to
  the chat room,if so when? please lrt me know.
• View Full Thread

• jobs
• Posted: 2007-11-17 16:04:37 By carmen C
• hey I was wondering if any of you could give my brother some idas on what jobs he could do. He is 22 and was just told he cant drive and that hes loosing his eye sight and he lives in a small small town and thers no buses. would love the feed back.
• View Full Thread

• First time
• Posted: 2007-11-13 16:50:04 By Elissa S
• Hi! I don't know why I've never done this before... I Was diagnosed with Stargardt's 10 years ago, when I was 19. I don't know anyone else with the disease. I wish I had other young adults that know exactly what I'm going through and the challenges you face losing your sight at such a young age. I graduated from college and worked for a few years with the help of RSB. Now I have a 2 year old and I want more than ever to be able to see clearly! Is this StarGen going to make my dream come true?
• View Full Thread

• ECT
• Posted: 2007-11-09 12:19:58 By Georgette K
• I read about Encapsulated Cell Technology (ECT) being in phase II/III clinical trials, and Stargardt's is never listed as one of the diseases it would potentially treat. Does anyone know anything about this?
  
  Thanks,
  Georgette K.
• View Full Thread

• help at school
• Posted: 2007-11-08 17:18:03 By Phyllis G
• I am asking for advice from anyone who may have had a similar situation. My son Conor is now in first year high school and doing very well. We had been offered a care assistant at the start of the year from the department of education. But having spoken to the principal they felt that it would draw too much attention to Conor in class and his grades were good - we got the computer and opti lenses which zooms in to the blackboard. Conor has to change class every 40 minutes. Which means carrying the equipment. All of the teachers except one forget about his problem and do not enlarge any printouts for him. I am a bit upset because I have now decided that we will have to get the help mainly to act as a backup for Conor. I just dont think its fair that he is being handed test papers in very small print and doing his best to read them. Then he is at an awkward age (13) and does not want to make a fuss. I have now asked for the help for next year but I am worried - the school said the help usually follow the kids around everywhere and draw a lot of attention, which is what we really want to avoid, we only want someone to get the info and enlarge it and give it to Conor for each class, and perhaps charge the laptop at lunch time. The visiting teacher says I must be very clear and insistant about what we want. Have I made the right decision. I feel so upset these last two days. Conor is doing so well now, but I am looking at how the volume of work will increase next year. Right now I suppose I am disappointed that the teachers have forgotten, I know they are busy. I think the problem with starguardts is that it is very hard for people to understand that reading standard print is so difficult . I'm sorry for going on but I know some of you who have children will understand, and as a mom I dont want my boy to feel different from his class mates. Phyl
• View Full Thread

• new to site
• Posted: 2007-11-07 16:36:14 By lucinda b
• i was just told i have stargardts at 40 my eyesite
  is 20/200 r ,20/100 l can anyone tell me what to expect !
• View Full Thread

• headaches
• Posted: 2007-11-07 16:27:51 By lucinda b
• hi,
  i was just wanting to know if any other's have trouble with bad headaches ? and what they have found helpful
• View Full Thread

Page 6 of 8.

<< < 1 2 3 4 5 6 7 8 > >>