Advice for parents of children with macular disease

When Kay’s daughter Matilda was diagnosed with macular disease at the age of three and a half, many questions went through her mind and she worried about what the future would hold.

She is not alone.

Macular disease affects people of any age and the news can come unexpectedly for many, including parents.

Kay, along with other parents of children affected by macular disease, has shared her top tips on how to cope with the news:

Get support

“One of the first things that we did was actually get in touch with the Macular Society,” Kay said. “We phoned the helpline just to get some advice, because we literally knew nothing. When you googled it, it was just old people.

“The lady we spoke to was brilliant and went through loads of stuff with us, we were probably on the phone for about an hour. She was great because she went through all the information and it made a big difference just having that someone who knows more about it.

“When you know nothing about it, it’s just nice to hear someone say it’s not the end of the world.”

Do your research

Chairman of the Macular Society John Dunston, whose son was diagnosed with Stargardt disease more than 20 years ago, said it is important to arm yourself with information.

“Find out as much as you can about this macular condition, and exactly what it does, so you’ve got a better knowledge,” he said.

“The knowledge itself we found very helpful; particularly when the child starts asking questions, the answers don’t all have to be vague and uncertain. The more you know, the more you can help your child.”

Talk to other parents online

There are a number of support groups online for those going through similar experiences. Kay said: “There’s lots of Facebook groups out there and talking to other parents on them is helpful.”

The Macular Society’s Working Age and Young People’s page has some useful information and advice.

Ask questions

“Ask questions when you go to the consultant,” Kay added. “Don’t be afraid to ask anything you need to, and go in with things written down so you don’t forget. We’ve written things down when we’ve seen anything online about treatment etc. and made sure that we’ve asked if it is available to Matilda.”

Regular eye checks for the whole family

Kelly who along with two of her three young children, has macular disease said she makes sure they all take their eye health very seriously: “It’s very important that our children have regular eye exams so we are aware when their eyesight deteriorates.”

She added: “We also have close relationship with their school, their teachers know to let us know if they see anything different in the boy’s behaviour when it comes to vision. Although our boys aren’t visually impaired at the moment we were put in contact with our visually impaired education facilities, should the boys need assistance whilst in education we can contact them without referral.”

Be open and honest

“As a family we feel it is important to be open and honest about macular disease and we talk about it often,” Kelly said. “It is important to us that the boys are aware of the future of their eyesight. We just hope something can be done before their eyesight is as deteriorated as mine. We are grateful for the research that is being carried out, funded by the Macular Society.”

The Macular Society hosts a Parents’ Telephone Support Group, which meets once a month. Topics of discussion can be anything from education and social activities, to the emotional development of their child. If you feel that you could benefit from support group and would like either more information or would like to join the group please contact Colin Daniels at colin.daniels@macularsociety.org . Alternatively, contact the Advice and Information Service on 0300 3030 111. 

Help find a cure for macular disease