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Diagnosis Odysseys aims to share patients’ stories to help understand the reasons for a delay in diagnosis.

Learn about how different the paths to getting the diagnosis can be for those that have Carney Complex.

People wanted to share their experience of getting a delayed diagnosis, in hopes of making it easiser for others just beginning their journey, possibly highlighting where improvement is needed in the ‘care’ of people presenting with findings suggestive of CNC.

Not freckly enough
Angela’s Odyssey

Family medcial history not considered
Jennifer’s Family Odyssey

Suggestive findings of Carney Complex, confirmed by genetic testing
Nathan’s Odyssey

Testing negative for the PRKAR1A Gene
Jackie’s Odyssey
Unknown Patient Odyssey

Why your story matters

Ever listened to someone talk about their life and thought ‘Oh, someone else has been through that, too? I thought it was just me!’ Finding similarities with other people
helps us live happy and healthy lives.

Your life may feel ordinary to you, but it might seem extraordinary to someone else.

Every story shared is a chance to make someone feel less alone.

Would you like to share your ‘Diagnosis Odyssey’?

Please feel free to get in touch using the contact form!

Photo Source:
flickr, adn_no, https://flic.kr/p/2iZiFXR