About Carney Complex

Carney complex is a rare genetic disorder characterized by increased risk of tumors growing in different parts of the body.

Many people associate “tumors” with cancer. But in Carney complex, most tumors are noncancerous, or benign. In addition, they usually do not spread to other parts of the body.

Tumors related to Carney complex may cause health problems based on:

• Size
  • Small tumors, such as adenomas (small), nodules (smaller), or lesions (smallest), may not cause any symptoms. For example, thyroid nodules usually do not require treatment, because they are too small to cause symptoms.
  • Larger tumors, including those on the heart called myxomas, may physically block blood vessels, leading to serious symptoms and sudden death.
• Whether they secrete hormones
  • Functioning (also called secretory) tumors or adenomas produce hormones and cause hormone imbalances. For example, a functioning tumor on the pituitary gland can cause high levels of growth hormone, resulting in gigantism or acromegaly (a type of overgrowth).
  • Nonfunctioning (also called nonsecretory) tumors or adenomas do not produce hormones. But they can disrupt the normal shape or size of and organ and cause problems with that organ’s functioning.

Because it is a genetic disorder, Carney complex can be inherited, meaning it may pass from parent to child through the genes. But the genetic change can also occur randomly, even if no one else in the family has the condition.

The disorder was named for the Mayo Clinic’s J. Aidan Carney, M.D., Ph.D., who first described it in 1985. There is still much for researchers to learn about this rare condition.

Who gets Carney complex?

Carney complex affects people of all ages, backgrounds, and ethnicities. People can be diagnosed at any age, and the symptoms may vary depending on a person’s age.

Although males are just as likely as females to have Carney complex, some related conditions, such as Cushing syndrome, occur more often in females.

People whose parents have Carney complex or a gene mutation that causes it are much more likely than other people to have Carney complex.

How many people have Carney complex?

Carney complex is a rare disorder. Since the condition was first described in 1985, only around 750 people worldwide have been diagnosed.¹ Because it is not well known, even to healthcare providers, Carney complex may be more common than statistics show, meaning more people may have the condition but not be diagnosed.