Ballymena sight loss support group facingthe threat of closure

The group, supported by The Macular Disease Society (MDS) was launched in 2009, providing encouragement, advice and the chance to meet others with the condition in a friendly environment.

Age-related macular degeneration affects the central vision and is the biggest cause of sight loss in the UK. This is just one form of macular degeneration, there many other types including juvenile macular dystrophies.

Those affected by macular degeneration can find every day tasks such as shopping, reading, watching television and even recognising the faces of others very difficult.

A spokesperson told The Ballymena Times that the current group leader has stepped down due to other work commitments and unless volunteers can be found it will be difficult for the group to continue to operate.

The volunteers will be needed to provide secretarial support, booking speakers and contributing to the planning of future gatherings.

Maria Willoughby from Ballymena began leading the group as part of taking a year out of her nursing career. Ms Willoughby’s grandmother was affected by macular degeneration and so she was keen to help others with the condition.

She said: “When my grandmother was diagnosed with macular degeneration she was provided with so little information and it was down to the family to find out more about the condition.

“One of the main benefits of the group is to provide information and aid people’s understanding of macular degeneration.”

Charles Bonnet Syndrome is a common side effect of sight loss, where the brain creates visual hallucinations in an attempt to make sense of the distortion in a person’s vision. The side effect is not a sign of any sort of mental illness, but a normal response of the brain to the loss of vision.

Mrs Willoughby said: “One lady in the group had been experiencing visual hallucinations but had not told anyone about them as she feared she was losing her mind.

“She was so relieved to discover that a lot of other people in the group had experienced the same thing and that it was a common side effect of macular degeneration. The group is able to help people in situations like this and reassure them. It would be very sad if the group was not able to continue running.”

The group meets once a month, giving members a chance to share hints, tips and offer each other valuable support and friendship. A variety of speakers ensures people attending are kept up to date about how to access local support and treatment.

Michelle Dutton, MDS Group Support and Development Manager, said: “There is a wonderful group of people in Ballymena who all benefit greatly from the chance to meet with others affected by the condition. This, coupled with the group activities, help people to regain control, build their confidence and get on with living life.

“We would like to get more people to come along but feel worried the group will close unless we can find a new volunteer. They won’t be on their own – I am there to support the group as much as possible and provide lots of information. We have a great volunteer who is the group treasurer and is keen to work with a new group leader.

“We have lots of ideas to share and will put the volunteer in contact with experienced group leaders, most of whom have macular disease themselves.”

The group currently meets on the second Monday of every month from 1.30pm-3pm at West Presbyterian Church, 15-19 Ballymoney Road, Ballymena.

If you are interested in volunteering for the position, or would like advice or support concerning macular disease, please contact the Society’s Helpline on 0845 241 2041.