SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:
Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:
“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam
“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen
“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea
SWAN UK bring families together through an online community and family fun days.