Future Cures/Treatments for Stargardt's Disease
Posted by ReadyForaCure13 on 6/14/2009 at 10:11 PM
Just want to get a discussion going on everyone on hears dream. A cure to this disease. I have heard from several doctors including Dr. Trabulsi from the Cleveland Clinic that this disease will be old news in 5 years. They are quickly advancing everyday in Stem-Cell research and the FDA process for Stem-Cell is just beginning here in the United States. However, in Germany, UK, and even China they are ahead of the US for this cure because they don't have such a lengthy process. Once one thing happens things will quickly fall into place. However I'm not saying a cure will be here tomorrow but it is in the future and definately in our generation. I am one to say I'll believe it when I see it but you have to believe they are quickyl advancing and we must do our part by donating to the FFB.
There are currently 23 replies
Re:Future Cures/Treatments for Stargardt's DiseasePosted by Judith Lesner on 6/15/2009 at 12:30 AM
I think it is important that while hoping and waiting for the "cure" that we do everything possible to ensure that our children have the services and equipment they need.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by mguntrum on 8/12/2009 at 1:21 PM
I am a patient of Dr. Traboulsi's at Cleveland Clinic. I have read some research and that is happening and am very optimistic that there will soon be a treatment, if not a cure. I wasn't diagnosed with Stargarts until I was 23 years old and since have become legally blind in my left eye. I hope that there is something soon before I lose more of my vision
Re:Future Cures/Treatments for Stargardt's DiseasePosted by Kaz Mom on 8/16/2009 at 1:06 PM
Hello, My 10 year old daughter was diagnoised with Stargardt's just 2 month ago. If you did not see the article on Fox News this past Thursday there was a story on how Gene Therapy has helped to restore vision a different Retina condition. Here is the link to the story
I know my doctor at Boston's Mass Eye and Ear told us that he believes that Gene Therapy has the greatest hope for a cure for Stargardt's
Re:Future Cures/Treatments for Stargardt's DiseasePosted by 3greatkids on 11/23/2009 at 2:45 PM
Hello! Our 15 yr old is seeing Dr. Nolan in Connecticut who administers ECHO for the treatment of her Stargardt's disease. Our daughter has realized an amazing change in only a month's time. I urge you to do your research and see what Dr. Nolan may be able to offer to you. We found him six month's after our daughter's diagnosis, second opinion and after she began seeing a low vision specialist in our hometown.
(This post was edited by the author on 11/23/2009 at 2:45 PM)
Re:Future Cures/Treatments for Stargardt's DiseasePosted by maddi'smommy on 11/24/2009 at 10:13 AM
My daughter will hopefully be going to the cleveland clinic this spring. I live in Illinois, but contacted them and they are anxious to see her. She is only 4 and was diagnosed with the disease about a year ago. Judy, just exactly what kind of injections are they and how do they work to help with this disease.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by ReadyForaCure13 on 12/5/2009 at 10:36 PM
I have been seeing Dr. Nolan for almost 6 months and have had little effect. The day after I did my first treatment I went back to him and he said I was a line better (somewhere in the 20/60 range) I went back a month later and my distance was the same but he said my reading and color vision had improved. However a few months later I felt my vision had slightly deteriorated. I went to my low vision specialist and he tested me at 20/80 in my right eye and 20/125 in my left. Now it's been a little over a month since then and I feel my vision has slightly deteriorated again. I go back to Dr. Nolan January 18th (Martin Luther King Jr. Day) so that will be my next test. I am 16 and currently still driving with a license and play varsity hockey for my school so this has not stopped me but you still feel depressed and think about it everyday in the aspect of (what if I didnt have this).
Re:Future Cures/Treatments for Stargardt's DiseasePosted by 3greatkids on 12/7/2009 at 9:13 AM
Hi. ECHO is not an injection, it is a topical treatment to the eyes right before going to sleep. I understand that some people have varying degrees of success with the treatment. We have been pleasantly surprised and very excited about our daughter's improvment.
READY FOR A CURE,
I completely understand your frustration. As a parent seeing my daughter go through this situation, it is so difficult. We are, however, thrilled with the progress Sara is making. She is very good about her regimen and takes the ECHO each night it is due so she doesn't lose any ground, she makes sure she keeps her eyes closed for eight hours and she reads or studies just before administration. She also takes Omega 3 and an excellent liquid vitamin, Eniva's VIBE Original. She used to be kind of sickly but with the vitamins she has been incredibly healthy and stays a lot more focused. She says she can tell the difference if she forgets her vitamins. I am sure everyone is a bit different in the reaction and ultimate results and I am so sorry that you are not realizing the same results as our daughter We will pray for those like you to improve with the results.
Thank you for sharing your story and letting us know. We will be praying for better success for you and others.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by Judith Lesner on 1/5/2010 at 9:55 AM
Thanks for sharing Sara's story and her success. Please keep us posted as to how she is doing. You are so right that not everyone always reacts the same way to treatments.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by Preetika on 7/21/2010 at 1:18 AM
Hi, I am also suffering from stargardt disease since 5 years back.I am located in Malaysia and I have been looking high and low for a cure for this problem.I feel depressed that at the age of 23 I am not able to do normal things like drive a car,find a proper job or continuing my studies as the country is not as understanding or i would say as understanding as it is over there.
Anyway I was going through all your articles and came across a Dr. Nolan in Connecticut who administers ECHO for the treatment. I would appreciate if I could have an email add to him or even a contact number as I would like to try the treatment that has been success on the 15 year old girl.
(This post was edited by the author on 7/21/2010 at 1:20 AM)
Re:Future Cures/Treatments for Stargardt's DiseasePosted by firefly89 on 10/14/2010 at 6:59 PM
My daughter was diagnosed when she was 14 years of age with Stargardts. The trials are very challenging however; she now has her business degree. I am very hopeful with our advanced science that our sons and daughters will have productive lives. I am interested in an email address or phone number of Dr. Nolan. And I would love to hear from families who have had this type of treatment. Thank you! Keep the Faith
Re:Future Cures/Treatments for Stargardt's DiseasePosted by hudydog on 11/13/2010 at 12:37 PM
I was diagnosed at age 14 now I am 39..I am losing my job in this terrible economy and do not know what to do .. I avoided furthering my education after high school because it was such a struggle to read the black board and text books..Now I have no idea what to turn to as employment.. I feel like there is nothing out there in todays computer world for a person with low vision... Any examples of people out there who have found they can have a career out in this world. I need some ideas..Tim, Cincinnati ,Ohio
(This post was edited by the author on 11/13/2010 at 12:45 PM)
Re:Future Cures/Treatments for Stargardt's DiseasePosted by maf3961 on 11/16/2010 at 4:29 PM
Hello, My name is Michelle McCauley. My husband was diagnosed when he was twelve years old. His vision has progressively worsened since then. He is twenty-five now and legally blind. Can someone send me the info on the clinic in connecticut please. My eamil is email@example.com Any help would be greatly appreciated!
Re:Future Cures/Treatments for Stargardt's DiseasePosted by jakeki4200 on 12/11/2010 at 4:15 AM
There is very much hope in the cure and treatement of the disease and the wonderful man from Massachusetts is at the forfront on the company. The Doctors name is Lanza and his company Advanced Cell Technologies just passed and FDA approval for an investigational new drug on November 22nd 2010 through the use of Stem Cell Treatment. The trials will be done on early at the beggining on the year and the company has already recieved funding by the government for the investigational period. The companies stock ticker is actc and is a penny stock at the moment but has grown since the announcment of this. Help support the company and macular degeneration.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by 3greatkids on 12/11/2010 at 9:29 AM
For those of you who are interested, I encourage you to contact Dr. Nolan's office. I am aware of another patient who I referred who just went on Dec. 6th, 2010 and with one treatment was reading two lines better on the chart. My girls have done amazingly well on his treatment, it is non-invasive, easy to take and has immediate results. Remember, this treatment treats the symptoms not the disease so it is NOT a cure, but rather an avenue to improve the vision you are losing and so far has helped to stop progression with my girls.
Gerard M. Nolan, M.D. F.A.C.S.
Nolan Eye & Laser Center
One Forest Park Drive
Farmington, CT 06034-0827
Tel: 1 (860) 674-9627
Fax: 1 (860) 676-8622
Re:Future Cures/Treatments for Stargardt's DiseasePosted by 3greatkids on 12/11/2010 at 9:37 AM
Tim, I read your comment and my heart aches for you... my two daughters have Stargardt's and I worry about their futures as well. Stay focused on your talents, volunteer in areas of your interests and network as much as possible in those areas - your talents will not go unnoticed. The one thing I've noticed while navigating the Stargardt's disease forum and getting on Facebook and researching to learn about new technologies, it is obvious to me that most of the individuals I come across that have dealt with Stargardt's or other blindnesses are very social, hard-working and motivated. You obviously possess these skills, and I pray you will be able to find a job in a field that you enjoy and are able to give your all.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by hudydog on 12/11/2010 at 10:03 AM
Thank You so much for the well wishes. That made my day !!
Re:Future Cures/Treatments for Stargardt's DiseasePosted by CEYHUN on 1/8/2011 at 7:02 AM
Me and My sister has a problem since we are 10 years old where we can not see anything in the day light and we need to wear sun glasses to decrease the bad effect of sun light.It is not only sun light , in close areas where too much light is used is also affecting us in a bad way.
We have been searching so many doctors and methods to decrease the bad effect of this bad illness and stick on the life.
Firstly we have found Nike max sight lenses.When you wear these contact lenses they work as a sun glasses and you feel much comfortable under daylight or any kind of light.Then Nike stopped producing these lenses and we felt very stressed.And then i found Softchrone company where i can buy a tool set and create and paint my own contact lenses.
This way we are trying to be a normal person and stick on life.
I married one year ago and working as an Account manager in a software company which works for the airlines.I always pray GOD for our current situation and willing to find a cure for every bodies' problems.
Have a nice day
(This post was edited by the author on 1/8/2011 at 7:04 AM)
Re:Future Cures/Treatments for Stargardt's DiseasePosted by kayden06 on 1/28/2011 at 4:53 PM
i am 22 yrs old and i found out i had stargardts about 10 yrs ago. i have it in both eyes and a cure would be like a miracle to me. ive always wanted to drive but with me having this disease i cannot get my license. i just hope they they can find a cure or something to help gain back vision so i can live some what of a normal life.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by cjvrbv on 2/6/2011 at 8:27 PM
I am new to this site but find it so very helpful. I have had SD for 18 years. I am a mother and wife and try to live life as normal as possible. I am going to see Dr. Nolan at the end of Feb and am hoping for good results but I am aware it may not affect myself at all. I will pass along the experience for all of those who want to hear more.
I am very eager for a cure for this disease as all of you are. Just want to say thanks to each of you who post all the information you have available. It has given me more hope than I have had for many years. If anyone has more information on the stem cell research, I would love to hear more about it.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by nkcleatsup11 on 5/24/2011 at 2:36 AM
Just want to start by thanking everyone for posting the information they have on treatments and potential cures we can hope for in the future.
Brief run down on me. I am a 29 year old man in update NY. I was diagnosed with this disease at the age of 11 after going through numerous tests. Over the next few years my vision rapidly declined and didn't level off until late high school early college. I ended up with about 20/200 vision which until this day is not allowing me to drive and live a normal life. I am a very prideful person and did my best to adapt / function despite the disease. I was able to play college soccer, and still shock many people when they learned of my disability (Most people will only notice if they see me on a computer, read or notice I don't drive). However life has been so hard because I am very insecure about this aspect of my life. I would like nothing more than to drive myself and do all the thigns I'm sure all the rest of you would like.
I am very fortunate to have a loving family that supports me. It wasn't until today my wife asked me if I would be open to receiving treatment if they ever found one. I stated that I had gotten so use to this lifestyle I really had not given it any thought.
I then jumped onto the computer and found this wonderful site. I am seeing so many people testify to the treatments their children and / or they are getting which are having positive results, which I am so happy to hear. I have a 3 year old son who for now is perfectly fine. I am praying every day he does not end up with this disease and have to go through the trials so many of us do every day.
I am curious about these treatments and would like to get more information about them. Are they for individuals with declining vision, or can those who have had it for decades receive them as well. If anyone could help Id greatly appreciate it. For anyone else who is struggling, been recently diagnosed, has a child, or family member and has any questions or wants to talk about life with this disease my door is always open. I've been there done that with Stargardt's with the exception of treatment. Feel free to email me at firstname.lastname@example.org.
PS...Sorry for the long winded post.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by JBrumfield@live.com on 2/16/2012 at 1:53 AM
Hello, my name is Jake and i was diagnosed when i was 16 years old. i remember when i first started noticing something fishy was going on when i would be at my basketball practices and i would be tired from running or i would be staring at something for a while.when i would quickly look away, i would blink and for a split second i would see a ring circle around the middle of my vision (when my eyes were closed). i would describe it as a lightning blue color. i do not see this ring anymore and my vision has declined to i believe 20/200 in both eyes, maybe worse i have not gotten a check up in a while. one thing i notice and is very irritating, is that i cannot recognize people unless they are literally ten feet or so away from me. i rely a lot on voice recognition to identify who a person is. i have done some research and read some posts on this website and i am not so sure about Dr. Nolan and his treatments. some say it works and some beg to differ. i would think that a persons best hope as of today is to go to another country in search of treatment. i know due to some families income that this option is not available to them but for those who are interested, a doctor in Istanbul Turkey named Dr. Osman Firatli uses elctro-acupuncture to treat the disease. many of his patients' vision dramatically increase. i encourage you to look further into this and visit these websites for more info.
Video of one of the doctors patients:
Hold out hope everyone. a treatment or even a cure will be available in the near future.
Re:Future Cures/Treatments for Stargardt's DiseasePosted by ablumon on 2/16/2012 at 9:42 AM
My name is Ayman, 23 years old, single male, live in Dubai / UAE , I have Stargardt disease in both eyes 20/300, and I am diagnosed at age 10 , Now , I am fresh graduated of university in a major of Accounting with Excellent rate 3.6-4 but what is the use of this!!!, I can't drive ,hard to me use computer and read, I spent in searching for every kinds of job around 8 months but nobody look to me.
I hope to find all solution to our problem, and I wish everyone to cooperate and condensation together, as brothers and sisters to help each and every one of us, I hope that I have enough money to be able to assist you and bring joy to your heart, and make you don't need to work, but I'm only a weak person need to work, need a help!
Re:Future Cures/Treatments for Stargardt's DiseasePosted by davea0828 on 3/22/2012 at 3:35 PM
Everyone, Advanced Cell Technology ACT is in Phase I/II trials treating patients with Stargardt's disease using Stem cells. http://www.advancedcell.com/
the results so far are very promising. Also check out
http://investorstemcell.com/ for ongoing discussions on progress of ACT.
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