I am so happy to find stargardts.net. My daughter-in-law was diagnosed at 19. Her goal? To become a doctor. Christine, Caroline (in particular) & Chuck who have also made comments under the Top 10 Stargardt’s Frustrations, I have many questions to ask you. In general, at what age did the blind spot become so fuzzy that it – or did it? – interfere with your daily home or work routine? We meet today to figure a plan: that she would go in the direction of becoming a doctor until such time that she could no longer practice and then she would teach. I know that each individual is different in the way Stargardt’s progresses but we are looking at the best case scenario with the worst in the background.
I’ve learned that the blind spot is caused by a vitamin A deposit. Do you diligently cut back on Vitamin A, have you been told that something in your system doesn’t process VitA well? And if so, what is it? I’ve seen that bilberry, areds are helpful. Did any of you take these and do you believe they were helpful in forestalling the effects of Stargardt’s? Were you told that certain foods would help? Anything holistic? Eye exercises? I’m asking these because you (and I) are over 50 and I wanted to find those who are older that were diagnosed in their teens or twenties. Your input, advice and information will be greatly appreciated Thank you so much
Sherryl
E-mail: sherrylcm@yahoo.com
I would agree. Cary on doing what you can for as long as it is possible. Besides, sithmoneg that you may think unlikely now, might later seem quite possible. I know judges and engineers who are completely blind. Of course you have to be realistic about being a doctor but i find that people tend to underestimate rather than overestimate what they would be capable of post vision loss.You are right about the vitamin A. As far as i know it is a good idea not to eat too many carrots and so on. But there isn’t really much that you can do. I certainly wouldn’t take eating bilberry, areds very seriously. There is no evidence that anything can be done to reverse the damage done to the macula.The great news for younger people like your daughter is that there are new treatments being researched. Those treatments will probably come too late to make a difference in my life i am 33, but they might help your daughter. If you are interested, you can google Stargardt stem cell therapy and Stargardt gene therapy .
Hi Sherryl,
I don’t know if you can slow down the disease. There are antioxidants and diet – so I’ve read and tried. You can try wolf berries. They contain xeanthanin. It is an antioxidant that functions to help reduce waste in the retina (this is what causes the deterioration). The wolfberries contain the highest concentrations of any food. You can also buy lutein and xeanthanin in a supplement. I am not sure if these actually slow down the disease significantly. The biggest hope is stem cell research. Hopefully treatments will be on the the market in the next 5-10 years if the safety studies continue to show promising results. In the meantime its helpful to deal with loss of independence and the psychological effects/stress of losing one’s eyesight. My daughter has Stargardts. She has lost significant vision since she was 14. She is now 20 with a visual acuity of 20/400. Things a sighted person takes for granted are a challenge – ex: finding things, getting on the right bus. Also most people don’t recognise partial sightedness as a disability. You are blind – or not blind. My daughter finds this frustrating. Good luck to your daughter-in-law. Stay in touch with her and support her in every aspect of her life.
I would agree. Cary on doing what you can for as long as it is possible. Besides, something that you may think unlikely now, might later seem quite possible. I know judges and engineers who are completely blind. Of course you have to be realistic about being a doctor… but i find that people tend to underestimate rather than overestimate what they would be capable of post vision loss.
You are right about the vitamin A. As far as i know it is a good idea not to eat too many carrots and so on. But there isn’t really much that you can do. I certainly wouldn’t take eating bilberry, areds very seriously. There is no evidence that anything can be done to reverse the damage done to the macula.
The great news for younger people like your daughter is that there are new treatments being researched. Those treatments will probably come too late to make a difference in my life – i am 33, but they might help your daughter. If you are interested, you can google “Stargardt stem cell therapy” and “Stargardt gene therapy”.
hello sherryl , i guess i can say in my case i was told at the age of 14 that by the time i was 16 i would be legally blind and not be able to drive , but i think my problem started way earlier than that , so i hardley remember seeing that well , i guess that’s makes me luckey in a sense , it is still frustrating as @$@% , i would say to your daughter in law go for it . -( don’t give up) — chuck—- email –candb250@yahoo.com
I would agree. Cary on doing what you can for as long as it is possible. Besides, shmntoieg that you may think unlikely now, might later seem quite possible. I know judges and engineers who are completely blind. Of course you have to be realistic about being a doctor but i find that people tend to underestimate rather than overestimate what they would be capable of post vision loss.You are right about the vitamin A. As far as i know it is a good idea not to eat too many carrots and so on. But there isn’t really much that you can do. I certainly wouldn’t take eating bilberry, areds very seriously. There is no evidence that anything can be done to reverse the damage done to the macula.The great news for younger people like your daughter is that there are new treatments being researched. Those treatments will probably come too late to make a difference in my life i am 33, but they might help your daughter. If you are interested, you can google Stargardt stem cell therapy and Stargardt gene therapy .