Thank you for caring and showing an interest to learn more about Carney Complex (CNC) to better understand what the person with CNC in your life might be going through.

What is Carney Complex?

Understanding everything that CNC encompasses can be hard to grasp when just getting started. You might have already tried reading some of the medical literature available online but found yourself struggling with the medical and research jargon.

This is why I want to introduce the ‘Carney Complex Umbrella’ to you.

Carney Complex Umbrella

Carney Complex is an umbrella term for multiple medical conditions that could just as well stand on their own but are linked together by the fact that CNC causes tumors throughout the body. (The name itself says it all, it’s ‘complex’, it’s made up of an intertwining group of medical conditions caused by tumors.)

It’s believed that people with CNC are missing a tumor suppressor gene that can cause tumors throughout the body and affects many organs.

Symptoms that can occur with Carney Complex:

  • Myxomas
    • Skin Myxoma
    • Cardiac Myxoma
    • Breast Myxoma
  • Overactive endocrine glands
    • Adrenal glands causing cyclic Cushings or Cushing’s Syndrome
    • Thyroid gland causing Hyperthyroidism
    • Pituitary gland causing Acromegaly and/ or overproduction of Prolactin
  • Skin
    • Lentigines, 
    • Blue nevi, 
    • Café-au-lait spots
  • Reproductive organ tumors 
    • Testicular tumors called Large Cell Calcifying Sertoli Cell Tumours (LCCSCT).
    • Women with Carney Complex may have ovarian cysts or growths
  • Tumors affecting nerves and bones (rare)
    • Psammomatous melanotic schwannomas (PMS) 
    • Osteochondromyxoma (tumor of the bone)
  • Other tumors (rare)
    • Liver (one of the newer observations. Click here.)

Want to have more detailed information on this?
Check out the NIH’s Patient Educational Materials and Nord’s information on Carney Complex here.

You can also watch this video. Dr. Constantine Stratakis was so kind to record a video for us back in 2018 talking about Carney Complex.

It’s important to us that supporters know Carney Complex affects each and everyone of us differently – even within families sharing the same pathogenic mutation. How an individual will be affected cannot be predicted.

If you want to understand more about the way the person in your life is affected by Carney Complex we would like to encourage you to talk to them.

For suggestions on how or what else you could do go to: Support a person with CNC.

Contributors

Text:

J. Woods

A. Cropper