Main photo above: Me stood next to the macular society conference sign.
I attended the macular society conference in London yesterday which was a brilliant day and well worth going to if anyone fancies it next year 😊. I loved finally meeting a man called Paul, who really helped me when I was first diagnosed and the get together afterwards was great too, chatting to others going through the same thing was very comforting ❤️. I also got to meet the wonderful lady who gave me my over the phone counselling through the Macular Society when I was first diagnosed, I was so pleased to meet her and get to thank her in person for helping me so much 💖.
I also learnt quite a lot whilst there and these were the main things that I feel others with Stargardts would all like to know. This is how I interpreted everything from the conference but as I’m not a medical expert some of it might not be 100% accurate.
- I tried the Orcam yesterday, this was brilliant, and I think this could be very helpful for anyone with advanced central vision loss. It is a little device that clips onto your own glasses and it can read out letters, signs, writing on grocery cans, food packaging etc and learns facial recognition or tells you who is standing in front of you just by using simple gestures. It is small and very discreet, and it doesn’t have to stay on your glasses, you can clip it on and off and keep it on a lanyard around your neck. It isn’t cheap (£2,700 standard, £3,500 with facial recognition) but they do allow you to trial it for a few weeks, the person I spoke to wasn’t pushy to sell it at all.
Photo above: Me trying on the Orcam glasses.
- There is a study currently being undertaken for thin retinite that may be able to slow progression of Stargardts. Other trials are taking place of other drugs that contain deuterated vitamin A that could also do this. They say these may be available in 5 year’s time. A full report is here https://www.journalslibrary.nihr.ac.uk/hta/hta22270#/abstract
- People who haven’t been genetically tested are being urged to get in contact with Dr Moosajee at Moorfield’s. The more results they have of our DNA, the better chances of working on treatment. As long as you have been referred by your doctor before for a macular dystrophy, she should be able to help, Moorfield’s is open to anyone in the country. If your Dr will not refer you then speak to her direct.
- Dr Moosajee from Moorfield’s advised yesterday not to bother with supplements or vitamins and definitely NO synthetic vitamin A. They are currently pushing to increase intake of all antioxidants such as blueberries, strawberries, raspberries, pomegranates. Look up antioxidant foods on line. Also, to consume recommended intake of vitamin c. She also advised eating natural vitamin a in moderation, things like sweet potatoes and carrots should be limited, liver shouldn’t be touched.
- Hopefully in two year’s time, whole genome sequencing will become available on the NHS called genomic Medicine. This will make it easier to predict and prevent disease and enable tailored medications for your specific needs. Hopefully and eventually, this will be done alongside a baby’s heel prick test.
- A gene therapy has been approved in America for another eye condition, but it hasn’t been trialed on Stargardts but that’s not to say that it won’t in the future. It costs £850,000 per eye, but the more it becomes available, the cost would come down dramatically.
- Dr Moosajee is working on a tablet that has already shown effectiveness for LHON and RP and seems to be working well to slow progression.
- CRISPR gene editing is in orphan stages and can be used to cut the faulty gene but research needs to continue with this and it will first be used in agriculture in animals.
- Studies are being undertaken in zebra fish as their eyes are closest to humans and they have lots of cones in their eyes compared to nocturnal creatures like mice that are often used. This study is to try and reduce cell death and help cones survive and if successful would help anyone even someone without genetic testing. It would suit all.
- They are trying natural approaches too as they would be more accessible to patients.
- All in all they do believe there will be something available in our lifetime, but cost and lack of funding is a major issue. The macular society give grants to research projects, students etc, without that, these trials wouldn’t be possible. At the end of the day we ALL need to start fundraising and make sure we know where our money is going. Doctors are then more likely to go into that field of work but are currently put off because of the lack of funds for their research.
Photo above: Me on a computer screen playing around with a screen reader camera.
Hope this has helped anyone who has read it with Stargardts and sorry if I have misheard anything, this isn’t scientific, just copied off of my own scribbled notes. I would recommend people to go next year if they can. I was surprised at how much I learnt and how informative it was 😊 am already looking forward to next year’s ❤️.
Photo above: Me with Colin and his guide dog from the Macular Society.