Facebook groups offer fantastic help and support

Facebook groups offer fantastic help and support

11th Mar 2023

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.

When Dane was diagnosed with his congenital cataract we were told that statistically he would have had more chance of winning the lottery than having a cataract - it's such a rare condition. At the time, we felt completely alone and isolated. We'd never heard of a congenital cataract, much less knew of someone else we could talk to about their experience. This was in 2010 so Facebook groups weren't a big thing back then. Other than some articles on the Little Four Eyes blog (and thanks to them for that!), we felt like we were on our own. 

Facebook groups have exploded!

Fast forward to the present day 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 even better. 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 https://www.facebook.com/groups/1012285218870721

Aphakic Kids https://www.facebook.com/groups/139232330344/

Parents with Cataracts/Aphakic Kids https://www.facebook.com/groups/436422123133209/

Parents of Children with Cataracts in Australia https://www.facebook.com/groups/117781494903209/

Children with Congenital Cataracts https://www.facebook.com/groups/119006164779279/

Congenital Cataract https://www.facebook.com/groups/184846774890183/

Cataract Tots https://www.facebook.com/groups/22580717068/

For Little Eyes https://www.facebook.com/groups/littlefoureyes/

Marfan Network Australia https://www.facebook.com/groups/888424367845015

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!