Support and working to cure blindness

The Macular Society provide free information and support to those with macular disease, along with their family and friends, to help people retain their independence.

The Macular Society provides a range of services to both those who have been diagnosed with the condition and their families, these include advice and an information services, counselling, befriending, patient information, teaching skills for seeing, access to treatment and buddies to support patients when having such treatment, genetic testing support and of course, a network of local support groups.

The network of over 400 macular support groups stretches across the UK. Each one offers practical and emotional support for people with macular disease, from those living with it today. Meeting other people with macular disease can help a person understand the condition, come to terms with sight loss, share information about treatment and ultimately stay independent.

Every group is different but, this is one I know about….

The Guernsey Macular Society is a self-help group affiliated to the national Macular Society in the UK. It was formed in 2015 by two Guernsey residents following a chance meeting in Southampton General Hospital. They realised the island was lacking in a support group for people coping with macular degeneration and they set about establishing one. The groups first meeting in 2015 was received positively, with about 20 people in attendance, but the media coverage was very good and immediately raised its profile and the monthly meetings, which take place at St Martins Community Centre on the second Wednesday of every month, attract between 30 to 40 members each month.

It was immediately evident at those early meetings, how important the group was going to be. At those early gatherings every person attending had the opportunity to introduce themselves, tell the group what type of condition they were coping with, generally wet, or dry or both; and to share their feelings and concerns. In virtually every instance the overwhelming feelings were frustration and anger. Up to the point of being impacted by the condition, most members had good eyesight and to have this taken away, almost overnight, made them angry. They could no longer pursue their hobbies, such as knitting, sewing, painting, DIY, reading or driving, which brought frustration; there was very little optimism, positivity or hope.

Five years on and the monthly meetings continue to be supported enthusiastically, with an average attendance of 35+ members. Guest speakers cover topics as diverse as: life as an airline pilot, radio presenter, or arctic trekker, and all points in between! However, the group's greatest strength is the shared experience of its members, those worries, concerns and frustrations of the early days have, to some extent, been overcome through becoming aware of how many others are coping with these conditions and by discussing techniques and experiences, solutions to problems can be sought and found. And with this approach a renewed confidence can be seen, with more members taking an active role in organising and running meetings and events.

Of course, we obviously keep an eye (apologies, there are likely to be many such puns!) on the developments in visual aids, and research and when possible an expert in those areas is invited to present to the group.., that's just what happened on 1st June 2016 when a clinician from Moorfields Eye Hospital, London visited Guernsey to give a presentation on their research. Afterwards we spoke about my condition and they gave me names of two people who had an interest in Bests disease, although it was stressed that there was limited work in progress at that time. I contacted them anyway and if you like to know what happened please click on the third image under the heading 'Groundbreaking research...'