First-ever treatment for dry age-related macular degeneration 

I think the name is knobie

Yes. He is wonderful.

I have Best disease, which is primarily an RPE disease (at least in its first stages), so I can't wait for this to become available! And yes, we need nothing short of miracles here with these kinds of diseases!

Go on a keto or carnivore diet. If it is mild or newly discovered, that should take care of it. Do not rely on areds vitamins.

Utube has many Drs discussing importance of anti inflammatory diet( seed oils are especially problematic ) Ken Barry is a good start

Hello May i contact you? How do youknow this

Have you found any info on this?

Habe es auch...live with it...c est la vie...the right eye...auge....day by day...

J in

Best stay away fr sun,if poss.

Hi Frankie, sorry to hear about your mother's diagnosis. I'd recommend you give our team a call and we can talk through the best options. Our number is 0300 3030 111 (Monday - Friday, 9am - 5pm)

The lineage treatment (see my comment below) was tried on one patient with Startgarts disease in Israel, I think. Sorry, I do not know what the results were.

50 Pounds Sterling in the Single Non-Profit Insurer National Health System, UK, per injection, there are no "Socialized Capitalized Middlemen Profiteers" to suck the blood out of citizens going blind.

Hi Anne. We are really sorry to hear this. Please know that you don't need to go through this on your own, we are always here to answer your questions or to just give you someone to talk to. Our Advice and Information team are on the phones from 9am - 5pm on weekdays, and you can call them on 0300 3030 111. Please do call us.

Re read these comments.

Hi, thanks for your comment. We are a UK based charity so we are only up to date on treatments in the UK. If you contact your Ophthalmologist they will be able to inform you whether the treatment is available in your home country. Thanks

@@MacularSociety Thanks for attending my quarry . Society is really serving the people who are in need .🙏🏾🙏🏾

The visual cycle modulator drugs under clinical trials should be far more promising for Stargardt. And they also come in pill form, thankfully - not as painful injections.

The lineage treatment (see my comment below) was tried on one patient with Startgarts disease in Israel, I think. Sorry, I do not know what the results were.

Unfortunately, only patients with late-stage dry AMD were enrolled on the trials for this drug. There is currently no evidence to support its use to treat any other macular conditions.

Hi Margaret, you will need to contact your insurance company directly to ask this. Thanks

Hi David. In the context of medication, the most 'cost-effective' option is finding a balance between the financial cost of medication for the NHS and the benefits it provides in terms of health outcomes. A medication would be considered as being 'cost-effective' when the benefits for those that take it outweigh the potential cost financially. This decision would look at lots of different criteria, which would include health outcomes for patients, as well as the impact of quality of life for patients.

@@MacularSociety Thank you for your reply. Obviously the Macular Society is a real and concerned entity. For myself, I just suffer from the condition and look (sic) forward to being blind in the last years of my life and therefore, perhaps , take a more personal view of the condition and of the financial considerations around what a drug is worth. Or more correctly put, at what point does the development of a drug stop being a social decision and is rather a commercial one? To get back to my original query "what is cost effectiveness in regards to a drug". It seems to me that the actual answer is that a drug will be developed into a disease or condition that will provide the drug manufacturer with the best financial return. Which, by definition, leads to drugs aimed at those that can afford them.The justification for the astronomical price of new drugs is that they pay for the future costs of developing new drugs but which actually seem to be providing the shareholders of the drug manufacturers with massive, even excessive, returns.

I take MacuShield and have done for many years. Would you suggest also taking Omega3 supplements? Is it possible to take too much? Thanks

The drug is called Syfovre and you can find out more on our website. Unfortunately, we do not know when it will be available in Australia but I'm sure if you ask your ophthalmologist they will be able to pass on any information that is available. www.macularsociety.org/about/media/news/2023/april/yourquestions/

Is the medicine and treatment 58:32 available in India?

@@rishiramgupta6572 you would need to contact your local ophthalmologist to ask this. Unfortunately, where we are a UK charity we don't have details on treatments or support available worldwide.

And what is your alternative method to improve your vision?

Really? How nice for you! But please tell others the name of the treatment or the provider so everyone can celebrate.

High quality Castor oil will stop cataracts from developing. Put a few drops in each eye at night (bedtime) , 2-3 times per week. Can be used nightly if needed.

@ShellyMi2008 @harriet1844 i will reply further in my email . thanks 😊

If you are based in the UK, I would recommend you give our helpline a call and we can discuss with you. Our number is 0300 3030 111. Thanks

Thanks for your question. We would recommend that you speak to your ophthalmologist regarding any supplements that you plan on taking. They will be able to tell you what would be best for you in your individual circumstances

There is currently no treatment available using stem cells, but it is something that is still being explored through research. Any research updates can be found on our website, so please keep an eye on our website to keep yourself up to date: www.macularsociety.org/

No, and to be honest it's not that good of a drug even for regular macular degeneration. Additional potential negative side effects on top of the usual ones of intravitreal injections, expensive, and not that great at only 20% reduction of atrophy. Don't get me wrong, for many people it might be better than nothing, but it's far from a magic bullet. For Stargardt you should look into drugs like the ALK-001 (a modified form of vitamin A that leads to less toxic junk accumulating in the retina). Even better, they come in the form of pills, so no painful eye injections required. Although they probably won't fix the the damage that already happened. And there are RPE stem cell treatments under development for all diseases under this category. I am also watching closely because I got Best disease.

Unfortunately, only patients with late-stage dry AMD were enrolled on the trials for this drug. There is currently no evidence to support its use to treat any other macular conditions.

Hi George, if you need any advice or support, please do make sure you give our helpline a call. Our number is 0300 3030 111 - we are always here to help.