Sturge Weber Syndrome

[luckyno.3]

Any other parents out there with a child with SWS?

 

[fairywings]

I found this: https://www.bbc.co.uk/health/physical_health/conditions/sturgeweber2.shtml

xxxxxxx

 

[luckyno.3]

Thanks, but I already know way more about it than I wished I did. I was just wondering if there were any other parents out there that wanted to share experiences.

 

[fairywings]

Oh OK. Well there is this which has a forum : https://www.sturgeweber.org.uk/

I know how hard it is having a child with a rare condition, my son suffered from a rare condition. (he was the 6th ever diagnosed in the UK and 56 world-wide and there are still only 100 cases ever now.) But there will be forums online that can help you. Sorry I can't be of more help. It is terrible to be thrown into an unknown but i hope you find someone to chat to. xxx

 

[luckyno.3]

Thank you. I'm kind of used to it now, but I thought if there was anyone who was just starting out I could help them out.

 

[sie35]

sounds simalar to my sons condition excuse my awful spelling barister-winter syndrome its very rare only a handful of kids worldwide have been diagnosed with it its similar to downs syndrome but downs dident show up on his mmr scan its very scary because of how little is known about it to make things worse my daughter died of a brain disorder so rare it dosent even have a name its one of those play it by ear and hope for the best things