I’m Marie Pritchard, Mum to Dottie in Primary. I’m a parent representative for SWAN UK and I wanted to tell you about Undiagnosed Children’s Day 2021.
Today, 30th April, is SWAN UK’s Undiagnosed Children’s Day a day where we raise awareness of the 6,000 children born every year in the UK with an undiagnosed genetic condition, undiagnosed because it is very rare, possibly not discovered yet or has an unusual presentation of a known condition. SWAN UK stands for Syndromes Without A Name and is the only organisation that supports families like ours in the UK.
It is thought that around 50% of children with a learning disability and 60% of children with congenital disabilities do not have a definitive diagnosis to explain, what in some cases are, many different symptoms. Sometimes terms like Global Developmental Delay can be confusing or misunderstood as a condition itself, often this is a symptom than can indicate there is an underlying genetic condition. Not having an overall diagnosis can come with it’s own unique set of challenges and having an organisation that can support you in this as well as connecting with other families going through a similar experience can have a huge positive impact, it certainly has for our family.
If you think your child may have an undiagnosed genetic condition please do look at the website and you are also very welcome to email me if you have any questions. If you are already part of the SWAN UK family do get in touch as well, it would be great to get to know you too as once it is ok to do so I will be organising local SWAN UK meetups. My email is firstname.lastname@example.org