By Jacq Miller,
On Saturday 24th September 2022, the eye YPAG met in person for the first time since the end of 2019. I love meeting in person so much more than on Zoom – although we do have to get up a lot earlier to travel to London! It’s worth it though! It was great to catch up with each other and so much had happened in the last 2 years.
First of all, Nathaniel Kabiri talked to us about his experience at Moorfields as a teenager and his top tips that you need to tell people at school when you have a eye condition. The main part of his presentation was about genes and the back of the eye. He showed us a picture of the inside of the eye and discussed how sometimes genes don’t work very well and that changes how our eyes work and look. It was interesting and fun and we all had to have a go at drawing an eye on a polystyrene sphere.
Next, Professor Annegret Dahlmann-Noor and her daughter, Jasmine, gave an update on her research about smart patches for children with amblyopia (when the difference in vision between your eyes is quite significant). We discussed how researchers can know whether children keep their patches on during the day and for how long. Smart patches have small sensors in them which know when they are in contact with human skin. The sensor transmits to a paired device and gives you information about the wearing of the patch. However, there are problems with the patches as the sensor needs to be taken out of the patch before the patch is disposed of. It is a brilliant plan but there are still teething difficulties.
After the lunchbreak (with yummy snacks and sandwiches), Annegret talked about Red Light which is research about a process which can slow down short sightedness (myopia). She explained what myopia is and how it affects vision. The eye becomes longer and the new red light treatment may stop the eye from becoming too big. The patients have to wear goggles with a red light for two minutes a day in order for this to work. However, the light can make your eyes sore after a while as we discovered when we tried on the prototype and it may be difficult to wear them for 2 minutes. Building up resilience to the light may be a good way forward. Manufacturing the goggles may be difficult.
Annegret also talked to us about clinical trials and the different stages in the process. This was interesting because Orla and I had done some work on clinical trials at the iCan conference in Lyons in July when we represented the eye YPAG with four other young people. There are lots of things to consider and steps which researchers have to go through in order for their research to go ahead and to be reviewed at the end.
Yvonne, a play specialist, then spoke about having a research passport for young people taking part in research and attending research appointments. Stickers or stamps which reflect the project the child is involved in could be collected on each research visit to the hospital. It will make the research more fun, encourage the children to take part and build a better relationship with the clinician. It was really fun because we were able to design what the passport might look like.
It was great to be back with some other members of the group at the hospital in London. The talks were interesting and gave us lots of opportunity to join in.