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Facebook groups offer fantastic help and support

As a parent with a child who has a rare condition, the internet and particularly Facebook groups, offer connection when we need it most. Here is our list of the best Facebook groups to help parents of kids with vision issues.

Best Facebook groups for parents of kids with vision issues

Fast forward to 2016 and Facebook groups have exploded.

Fast forward to 2016 and Facebook groups have exploded. There are groups for almost every interest you can imagine (and some you probably never knew existed!). While the internet is a brilliant resource for many parents, I believe that Facebook groups are particularly good. They allow us as parents to connect with others who are going or have been through the same things we are. These parents offer support, ideas and advice at a time when we can be doubting ourselves and the choices we’re making for our children. They’re almost global, so it’s possible to connect with parents who have children with the exact same condition as yours. This is no small comfort.

Facebook groups are open all day and night

Need some ideas on how to stop your child constantly ripping off their patch? Or maybe you’ve got doubts about a diagnosis and are looking for contacts to get a second opinion? Or maybe you’re just having a really bad day with contact lenses, glasses or patching and need someone to give you a pep talk. There will be someone active in a related Facebook group at any time of the day or night that will be willing to give you a hand. 

Obviously there is a concern that all this advice is unsolicited and only backed by the contributor’s own personal experience, not medical science. So long as parents realise this though, and always defer to their doctor for advice, these groups can be a wonderful support. 

Here are some fantastic vision related Facebook groups that I've found:

Little Aussie Four Eyes

Aphakic Kids

Parents with Cataracts/Aphakic Kids

Parents of Children with Cataracts in Australia

Children with Congenital Cataracts

Congenital Cataract

Cataract Tots

For Little Eyes

Marfan Network Australia 

Obviously these ones focus on the condition that Dane has (although Little Four Eyes covers pretty much everything). If you have any others related to conditions your child is experiencing, please let me know and I’ll add them to the list!