On Saturday September 16th 2017, I attended the Macular Society conference in London with my daughter.
Right from the time we stepped outside the Tube station, I was astonished at how well they were organised. As we stopped to look at our maps of the location of the conference, we spotted two people in yellow teeshirts with Macular Society on them. Every hundred yards all the way to the hotel, on every corner, there were more yellow teeshirted people many with flags to attract our attention.
We were greeted at the Hotel by warm friendly volunteers and shown where everything was. Including coffee and pastries.
The exhibitions were many and helpful and as we entered the main conference room, my daughter remarked that she was impressed by the 600 people who were proactive and not just sitting back and being visually impaired.
At 11 am the conference began with a welcome speech. Followed by three speakers. The first gave a simple illustration of the mechanics of AMD, using a packet of biscuits as an example. When the lowest biscuit in a packet is stale, it crumbles and disintegrates. This is what happens in our eyes, and the cleaning cells wear out and crumble. (Not absolutely accurate, but that is the gist of the talk.)
The next speaker was a consultant from Moorfields who was more scientific. And due to restrictions in time he had to speak very fast. But he gave examples of the many experiences of how AMD can progress, both from the patients point of view and the consultants. He also said that while we question why there are so many cases now, we need to bear in mind that we have an increasingly ageing population. Our bodies are not meant to last that long! Which you can agree with or not.
The third speaker gave a talk on Charles Bonnet syndrome. People with AMD can hallucinate. Some hallucinations can be dangerous, for example one may see a brick wall in front of them that is not there. But there could be the day when there really is a brick wall! There can be clouds of butterflies or people with odd clothes or shapes. They reckon that it is the brain compensating for the loss in sight. There is research going on about this, but no answers yet. However, at question time a woman in the audience said that, she had had hallucinations for some time, but since she had developed another age related disease they had faded away, and she wondered whether there was a connection and the brain was now concentrating on the more serious disorder. The Speaker was very interested to hear about this and was going to talk to her more afterwards.
At 1pm, we broke for a delicious lunch of rolls, sandwiches, wraps and fruit. Coffee was in full flow all day long.
After lunch we went to the workshops of our choice. We went to the one on supplements and nutrition. Very interesting. The best thing that you can do with supplements is to study the AREDS reports. I will do a seperate blog about supplement and AREDS in a couple of days.
As far as food was concerned, eat the rainbow, which is what I have said in other blogs before. Include lots of veg, the darker the better, and fruit also darker the better. Red meat, (not processed) is good, especially liver.
It was emphasised that once we have MD all we can do through food and supplements is to slow down the process. But that if we take on a healthy lifestyle early in life AMD along with a lot of other diseases can be delayed if not eradicated. I will add that I believe that even if we do go on to have any disease, if our bodies are healthy in the first place, we stand a better chance of recovery or at least we help our bodies to fight it.
It was also emphasised, how much smoking can damage the eyes.
So for those reading this that don’t have AMD, bear in mind that it is another reason to live healthily.
We then went back to the main conference room and heard another speaker on the latest research. They are now in a position where they can announce success with two people who have received stem cell surgery. Their eye sight was quite bad but they have now said there is an improvement. There are now another five waiting for surgery. It will be about five years though before they will be putting this treatment out for the public. Even then, at the moment it will only be available for the most suitable criteria.
I could not help but wonder what will happen when NICE get hold of it!!
But, my daughter who stands a big chance genetically of getting AMD was encouraged by the day and learnt a lot about how to lessen the chances of it happening. Especially the amount of time and money that is going into research and finding a cure.
There was an awards ceremony for the best team within Eye hospitals, kindest and most helpful Opthamologist, and the various volunteers within and out of the MD Society.
All in all a wonderful day, and all for less than £25 I must add.
I for one am going to become a paid up member of this marvellous society. You will see their leaflets and booklets with loads of information, in yellow and black enlarged print in the Eye departments of your hospitals. I have come accross their literature in my capacity as a volunteer for my local Guild, Improving Lives. I also belong to one of their loca groups who meet monthly.
There is a helpline for those who are worried and want to talk to someone. And there were also the numerous volunteers who guided us to the hotel, were around with their smart black clothing and scarves or ties with the logo on them, to help and support in many ways in the conference and hotel, many of whom have MD themselves, and prove that life does not end with this condition. We can still contribute to society in a way that will encourage those who are badly affected, and prove that.
So, watch this space for lots more to come as I learn more, and experience myself what can happen in our everyday lives with AMD. Everyone experiences it differently, but it is useful to find out from others how they overcome it.
There are groups on Facebook and here are the links.
First the UK MD group for the UK.
Secondly for the USA
I belong to both.
The Macualr Society Website is;