For too many years, Down syndrome has typically been presented as a list of potential health conditions. We know differently and we see having Down syndrome as being so, so much more: people who are valued loved members of their families, communities and wider society; people who have the potential to live full and rewarding lives. We hope this website and Positive about Down syndrome’s website will give you an insight into the lives of people with Down syndrome, their friends and families.
At DSUK we are not medical experts, however, we are experts by experience, and we work with experts by profession in order to provide parents and family members with the information and support they need, as well as signposting to organisations who are experts in their given fields.
Please do not think that everyone with Down syndrome will experience each of the conditions included in this health section. From experience, we know that most of our family members will have some additional health needs but generally not many. Also, worth considering that there is no one health condition that is exclusive to someone with Down syndrome, each condition can be experienced by folk without Down syndrome.
If you are both a parent of someone with Down syndrome, and a healthcare professional, you may like to join our group.
For professionals
We offer free informal monthly lunchtime webinars, aimed at supporting and training all healthcare professionals around best practices to improve the maternity experience of parents of a baby with Down syndrome.
Created and delivered by parents, experts in the lived experience of pregnancy and life with a child with Down syndrome, the sessions will provide you with a chance to learn from our experiences, to seek advice, and ask questions.
Diagnostic Overshadowing
Diagnostic overshadowing is when doctors or health professionals assume that a symptom or health issue is just part of having Down syndrome, rather than investigating the cause and potential treatment further. This can mean that real, treatable medical conditions get overlooked, leading to delays in care and/or unnecessary discomfort/lack of treatment for your child. Our guide can help you recognise and speak up about diagnostic overshadowing, so your child gets the care and support they need.
At DSUK we are not able to provide legal or medical advice. We work hard to be able to disseminate information and to provide support to our families and the professionals who work with them, to the best of our abilities. We adopt a rights based approach to providing information and support, founded on experience and knowledge.