Have you heard of diagnostic overshadowing?

If you, or someone you care for, lives with TSC, you might have experienced times when new symptoms or concerns were dismissed with the explanation: “it’s just part of TSC.” However, this simplification – known as diagnostic overshadowing – can sometimes lead to missed or delayed diagnoses.

Diagnostic overshadowing happens when a person’s existing diagnosis (for example, TSC) causes professionals to overlook other health, developmental, or mental health issues. Instead of investigating new symptoms, they may be attributed automatically to TSC, even if they’re unrelated. 

Common symptoms that might be missed due to diagnostic overshadowing include:

• Mental health issues (such as anxiety, depression or mood changes)
• Developmental conditions (like autism or ADHD)
• Physical pain or illness 
• Behavioural or sensory changes

Read more about what diagnostic overshadowing is, how to spot it, and what you can do in this article from the Tuberous Sclerosis Association of the UK.

If any of this sounds familiar and you’re not sure what to do next, our TSA Nurse is here to support you. Katrina understands the complexities of TSC and can offer education and information to help you advocate for the care and attention you or your loved one deserve. Whether you’re navigating the health care system or just need someone to listen, help is just a call or message away. Email [email protected] or phone 1300 733 435 (Australia only).

DISCLAIMER

This information is intended to provide some insights into recent TSC-related research.  It is not intended to, and it should not, constitute medical or other advice.  Readers are warned not to take any action without first seeking medical advice.