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- Dr. Ayugari
- Posted: 2008-09-24 03:23:08 By John L
- i d like to have Dr. Ayugari s email to contact with
thansks john - View Full Thread
- Confused - can anyone advise?
- Posted: 2008-08-23 07:17:24 By c s
- I was told on 1st August by an opthalmologist at the hospital that my 5yr old daughter has MD, which was genetic. Having never heard of this condition and being told that all her tests were fine (ERG,amsler grid etc.) and that she had 20/20 vision I left not feeling to worried.
Of course on coming home and looking on the internet to find out exactly what MD meant we were devestated.
I went to my GP looking for answers to all the questions I now had. He advised waiting until the letter from hospital cam and now after reading it I am more confused than ever.
The letter states that she is
Thought to have problems with the macula
Some slight speckling of macula reflex
Does not exclude MD
Lack of symptoms
Vision 6/6
My GP feels that this basically states the she does not have MD but the opthalmologist said to us she had MD.
We are now unsure where to turn for answers.
Can we get a genetic test?
Should we see another doctor?
Can anyone who has a young child diagnosed tell me their symptoms?
Can anyone help with any advice - View Full Thread
- Help with declining vision
- Posted: 2008-08-22 13:06:47 By Suzanne P
- Hi, if anyone can give me some advise on what to expect I will appreciate it. I was diagnosed with Stargardts at age 28 but had the good forturne not to start loosing sight until about 6 years ago (am now 55). I am really struggling now with many blind spots, poor night vision, difficulty in reading phone numbers, clocks, etc.
I am not even sure what my vision is because it seems very difficult for the optometrist to get a true number. I do still drive in day light (very carefully) and sometimes I see better than others expecially in the a.m. Anyone that has already been thru this please give me some advise and hope. You can email me off this list if you want to. - View Full Thread
- Reading
- Posted: 2008-04-30 16:55:51 By Casey F
- I have had SD for years and usually use a hand held magnifier for reading. Lately I am finding it annoying when I am reading for long periods of time. I love to read and am looking to find a better way. I am willing to spend the money on a portable cctv, if it is worth it. What other aids are out there that would make reading a little more pleasurable?
Thanks! - View Full Thread
- New Here
- Posted: 2008-04-29 21:49:23 By Helene S
- Hi everyone,
I've lived with Stargardt's for 17 years (probably longer)but have only recently begun perusing sites and message boards for the visually impaired. The main reason for this was that with a young family and a job, I didn't have a lot of free time and I think I've managed to "get by" pretty well all these years.
As I recently lost my job of nearly 20 years, I'm contemplating my professional future, unsure of what to do next. Of course, my disability has to be a major consideration. In your expreience, are there some fields that really stand out as occupations that a sight challenged person can realistically expect to succed in? - View Full Thread
- Gene Therapy to Restore Vision
- Posted: 2008-04-28 00:17:07 By Chin S
Pls visit this BBC web site ans see
if anybody in the UK can give us real practicle side of this therapy please...
http://news.bbc.co.uk/2/hi/health/7369740.stm- View Full Thread
- new outreach for Stargardt community
- Posted: 2008-04-23 12:35:19 By dan r
- Hi, my name is Daria Zawadzki. I was recently introduced to Dan Roberts, Director of MD Support, because we share the common goal of providing support to teens and young adults with Stargardt disease. I currently facilitate support groups for the Jewish Guild for the Blind, and we have partnered with MD Support to offer telephone support groups for teens and young adults who are affected by the condition. We will begin in June with weekly toll-free meetings. If you would like to learn more, please visit www.mdsupport.org/telesupport/jgbflyer.html .
If you are the caregiver of a teen with Stargardt disease, I will conduct parent orientation sessions via teleconference before the group starts. This is to help you feel comfortable about the activity your child will be involved in.
In 1992, a few months before arriving at Harvard University for my freshman year of college, I was diagnosed with retinitis pigmentosa, a retinal degenerative disease. Those first few years I was in shock and denial. The most incredible thing to come from accepting RP as just a part of life, and being very open about it, is that I have learned in the deepest sense the power of friendship and human kindness.
After graduating Harvard in 1996 with a BA in Psychology, I studied social work at Columbia University and law at Fordham University. I am a licensed clinical social worker and lawyer. I worked as an elementary school counselor for three years before starting a family. I am blessed with a wonderful husband and two amazing toddlers. They are a handful! I have enjoyed being a full-time mom for the past three years.
In October of 2007 I began to work part-time for the Jewish Guild for the Blind. I facilitate a weekly support group for parents who have children with retinitis pigmentosa. Group members share their fears, struggles, joys, accomplishments and advice. It is an incredibly rewarding experience to be a part of this process. I would be honored to facilitate a support group for teens and young adults with Stargardt disease. I know a group like this would have been very helpful to me when I was a teenager dealing with the challenges of living with low vision.
It takes great courage to speak openly about one’s challenges in life. Sharing experiences with one another, however, will give you strength and allow you to take comfort in the knowledge that you are not in this alone. Dan Roberts' work with the MD Support Community is very inspiring, and I hope I will get to meet many of you soon.
Sincerely,
Daria Zawadzki, J.D., L.M.S.W.
Jewish Guild for the Blind
New York, NY
- View Full Thread
- Sirion Information
- Posted: 2008-04-21 21:14:02 By Georgette K
- Hi Everyone,
The following is an article that is worth taking a look at:
http://sev.prnewswire.com/biotechnology/20080421/CLM05521042008-1.html
Regards,
Georgette K. - View Full Thread
- Help avoiding vitimin A
- Posted: 2008-04-18 11:10:58 By Kim M
- Hi,
I have read that SD folks should avoid vitimin A and wonder if anyone can help identify what foods to avoid. For example, I've been eating lots of carrots and now wonder if this is bad for my SD? Can anyone list the top 10 foods to avoid?
Thanks,
Kim - View Full Thread
- interesting news
- Posted: 2008-04-16 12:30:25 By Doug R
- I ran across this today and thought I'd pass it along. Go to http://www.medicalnewstoday.com/articles/104244.php
Its nice to know that every day brings us just that much closer to a cure. I look forward to the day I can say my son HAD Stargardts!!!
Doug - View Full Thread
- Fenretinide
- Posted: 2008-04-15 06:05:49 By Kim M
- Hi,
Does anyone know what the latest news is on Fenretinide? The article on this website is quite old but the drug sounds really promising - I have searched web and cannot find out much info on how this drug has progressed.
Thanks,
Kim - View Full Thread
- Negative Genetic Test????
- Posted: 2008-04-13 20:58:14 By Heather N
- My 10 year old son was diagnosed with Stargardts by a fluorscene angiogram (sp?) in September and I just got a call from his retina specialist saying that the genetic testing he had done in Iowa (we sent the blood there)came back negative for the known Stargardts gene. She said that doesn't mean he doesn't have it. It doesn't make any sense to me. Has anyone had a similar experience? She said she would have a genetic counselor get back to me. Any thoughts would be much appreciated! Thank you!
Heather - View Full Thread
- Neurotech
- Posted: 2008-04-12 16:26:48 By Roslyn S
- HI There Everyone: Is anyone familiar with the phase 2 clinical trials Neurotech is conducting? They are acheiving results with the a cila neurotrophic factor implant (CNTF) on patients with RP whose vision is 20/100 or worse. You can read about their research by going to:
http://www.neurotechusa.com/news_press_050105.asp
My RS is one of the surgeons doing the implants. He feels that CNTF has exciting implications for SD patients. If Phase 2 goes well, they might get FDA approval. I am hopeful that there may well be a "therapy" for inherited retinal diseases in the near future! Kindest regards, Roslyn - View Full Thread
- hand held cc tvs
- Posted: 2008-04-04 21:45:32 By hessie k
- hello all,
I was hoping that maybe someone could tell me which one of these things work best for those of us with SD.thanks
Hessie K - View Full Thread
- blue light
- Posted: 2008-04-01 13:58:54 By Karen B
- we wear sunglasses outside b/c blue light is harmful to our condition. Blue light is also emitted from other inside items such as light bulbs, computer screens, tv, etc.
I found this company in one of my magazines. The products are designed to assist with sleeping disorders, but I think they might also benefit us. https://www.lowbluelights.com
i have purchased the computer screen cover and a few bulbs. They are very yellow and require an adjustment period. has anyone else used their products? - View Full Thread
- Gene Therapy
- Posted: 2008-03-30 11:39:07 By Georgette K
- Check this out. I wasn't aware that someone could pay to part of a clinical trial that isn't approved yet.
http://www.casperstartribune.net/articles/2008/03/30/news/casper/f6e545cf977bd2388725741b0075cbe7.txt
What do you think? - View Full Thread
- all new
- Posted: 2008-03-28 14:57:40 By mandie k
- Hi I am 26 years and have SD I just want to know if I am goeing to get totaly blind ore what?
- View Full Thread
- Blind Painter
- Posted: 2008-03-26 13:53:41 By Eldie T
- Not sure how many people saw this, but it should bring some inspiration to your day.
http://www.youtube.com/watch?v=8P84bfFpVWE - View Full Thread
- Gene Therapy
- Posted: 2008-03-24 11:35:42 By Nina S
- We are looking into possible gene therapy for our son who was diagnosed with SD. Does anyone have information about it they can share? My understanding is possible clinical trials will start later this year.
NS - View Full Thread
- Gene Therapy
- Posted: 2008-03-24 11:35:38 By Nina S
- We are looking into possible gene therapy for our son who was diagnosed with SD. Does anyone have information about it they can share? My understanding is possible clinical trials will start later this year.
NS - View Full Thread
- Dr. Nolan
- Posted: 2008-03-24 11:33:00 By Nina S
- My son has SD, was diagnosed in Dec '05 and we started using Echo therapy last October. Little results were seen using one drop every other night so we increased to 2 drops and he had 2 instances of double vision, and also got a very serious eye infection. I do not think Dr. Nolan is completely honest about Echo therapy, and never truly answered concerns or questions I had about the treatment from the onset. Do not waste $1,500 trying his treatment, save it for something that can truly make a difference.
NS in Casper, WY - View Full Thread
- TREATMENT for SD
- Posted: 2008-03-14 04:31:38 By Loran J
- My daughter Tess (11 years old) as SD.
Sofar we donot find any treatment to cure or stop this desease.
Can anyone advise us in any cure or treatment???
Hope to hear from you
Loran from The Netherlands - View Full Thread
- Experiences Dr. NOLAN
- Posted: 2008-03-14 04:30:09 By Loran J
- My daughter Tess (11 years old) as SD.
Sofar we donot find any treatment to cure or stop this desease.
Can anyone advise us in any cure or treatment???
Also we hear about Echo Therapy of Dr. Nolan.
Has anyone experience in this?
Hope to hear from you
Loran from The Netherlands - View Full Thread
- NNRI's StarGen collaboration with Oxford-BioMedica
- Posted: 2008-03-13 10:46:48 By Kristine A
- Hello all,
I would like to clear up some confusion about NNRI's StarGen collaboration with Oxford-BioMedica.
The message that was posted earlier was not written or authorized by anyone on the NNRI-Oxford Joint Management Committee that has sole responsibility for the development of StarGen for Stargardt's disease. I assure you that not only are sufficient funds available at this stage of development, but the Joint Management Committee is pleased with the pace of the StarGen project.
Here is a sampling of this year's accomplishments and aims:
*Developing clinical protocol/held preliminary investigator meeting to define study
*Proof of concept work peer reviewed and accepted for publication in leading Gene Therapy Journal
*Appointed regulatory CRO to accelerate transition into the clinic
*Aim to initiate regulatory interaction with FDA within the year
*Manufacturing development for ocular applications ongoing
*Pilot non-clinical study work in progress
*Non-clinical safety package determined
Again, NNRI, Oxford, and StarGen's investors remain committed to initializing clinical trials as soon as possible, and when we have any further updates, FFB's constituents will be the first to know.
Best Regards,
Dr. Steve Rose
Chief Research Officer, FFB - View Full Thread
- Son 20/200 legally blind?
- Posted: 2008-03-12 01:32:23 By jacqueline r
- My 12yo was diagnosed 1 year ago. I've just become aware that 20/200 is legally blind and wanted to know how to facilitate his education. What about standardized testing? We live in california. Also, we saw a low vision specialist, so far he has tried hand held magnifiers without much success. What are other options?
Jacqueline - View Full Thread
- FFB and Oxford Biomedica - Stargen
- Posted: 2008-03-11 17:45:21 By Deborah T
- I know that FFB is helping to fund research into Stargen in collaboration with Oxford Biomedica. Oxford have just issued their end of year reports, but it doesn't list any progression in the development of Stargen? Is there anyone who is watching this group who can give us any further info? It seems strange that there is no info on here about development etc, when it is a collaborative effort?
It seemed so promising, but why has it suddenly come to a halt. Any info is better than no info at the moment.
Oxford are doing really well with their Cancer fighting work, but why when so much money and effort has been put into Stargen have they just let it stick at this point. Surely if it is viable, it would be worth them taking it into trials, especially if they are being independently funded by FFB?
Any comments anyone. - View Full Thread
- What can I expect?
- Posted: 2008-03-10 04:03:32 By Rebecca H
- My name is Rebecca, I'm turning 30 this month, and last year I was told I have Stargardts. I have to admit I haven't taken the news well. My diminishing eye sight started as a joke with friends. While playing Texas Hold 'Em I would often have to lean in to see the community cards or I wouldn't see the suits correctly. I went to the eye doctor thinking I just needed a better script, when I couldn't even see the giant E on projection on the wall I thought it was faulty equipment, except the look on the doctors face... 2 months later, and a long day at Mass Eye and Ear in Boston, I was told I have Stargardts, my sight will only get worse, and there is nothing I can do to prevent it or slow it. At least thats all I heard. Admitedly I haven't gone back because I don't want to know how fast is will happen, I already know it's going fast. What wasn't explained, what I want to know, is what will it be like when it is bad? I'm a single mother with two beautiful kids... My daughter is just turning 11 and my son is 8. Will I be able to see how beautiful my daugher looks on her wedding day? Or how handsome my son has grown up to be? I am already having trouble helping with homework, seeing it, how will I be able to be there for my kids when the work will only be getting harder? My son has learning disabilities and needs all the help he can get. My daughter can't understand why her mother panics in crowds because she can't recognize her own daugher from across the room. I'm lucky in that I have two great parents that I live with and rely on them for many things. Mostly to drive myself and my kids everywhere. I don't have a licence because I'm too scared to drive, while a passenger things are suddenly in front of the car and I would have hit them if I was driving. I'm too scared that it could be a person. What can I expect from this? I don't mean time lines, aids I can use, ect. I mean what can I expect to see (or lack there of)? Please, if someone could describe it to me I'd really be greatfull. Thank you
- View Full Thread
- Race to Cure Blindness - Foundation Fighting Blindness
- Posted: 2008-02-29 09:22:49 By Kristine A
- Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
- View Full Thread
- Stargardt athletes have more fun
- Posted: 2008-02-29 08:51:48 By Larry R
- One thing for sure, athletes with SD get a lot of press attention. Just read about a Canadian cross country skier. And there was the marathoner, the bowler, the sharpshooter. Just kidding about the sharpshooter.
- View Full Thread
- Ignorant people (at work)
- Posted: 2008-02-28 04:52:59 By Andy L
- Hi there, it's been awhile since I've posted.
My name's Andy, I'm 26 years old, and have lived with decreased vision of 20/200 in both eyes since I was about 19, caused by stargardt's.
Like pretty much everyone on here that has the disease, I've been through my fair share of trials and turmoil... coping with frustrations of all types.
Despite having overcome and/or found ways around most obstacles caused by stargardt's, the ONE thing I seem to never be able to control is people's ignorance regarding my capabilities... specifically the ignorance of co-workers and bosses.
Here has been my strategy lately when I apply and work at a new place (I'm in computer networking aka IT):
1) Apply for and accept the job, without mentioning my vision problem. Despite many laws meant to 'protect' us, prospective employers will not hire us if they know in advance. (At least that's been my experience).
2) If, after working a week, I realize I cannot do a job without some sort of accommodation, I'll try to provide my own. If that doesn't work, I'll let my employer know. At this point, I'm hired, so an employer firing me for asking for an accommodation would be risky for them.
Here is the problem I've ran into tonight:
It is clear I have a vision problem to my co-workers, only because I either sit very close to my computer screen, or use a screen magnifier with a larger-than-average PC monitor. However, I'm experienced, I do my job, and I do it VERY well.
I expressed interest in a different position a couple months ago... it would be a promotion, and initially the department head was very enthusiastic. That was true, until a couple of his employees mentioned off-hand that I have "difficulty seeing the screen and maybe would make mistakes of a critical nature."
... I am a professional, and have been both a network administrator and network engineer in good standing with companies (on my resume) that have 200+ employees. All of those positions were held AFTER having my vision decreased by stargardt's. Words simply cannot express the frustration I feel here. I've worked nearly 7 years to overcome these sorts of things... I've worked my way up the IT ladder through hard work, education, and exceptional professional conduct.
But my eyesight will likely forever be the thing that keeps me from being promoted within the same companies I start in.
I'll end this letter of frustration with a brief conversation that took place this evening between myself and a guy working in the department I wished to move into:
"That must be a braille clock on your desk."
My response, "No it is a BINARY clock, meaning it displays on/off lights that tell the time based on binary math."
"Well it looks like a braille clock to me."
How typical for a guy who can do binary math (the guy who made the comment), to see a binary clock and comment that it must be braille.
For the record, I do not and will hopefully never need to know braille. - View Full Thread
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