Carney complex can be deadly when heart myxomas appear, impacting blood flow and heart function.
That can lead to heart attack and myxomatous symptoms, in which the heart valves dont close completely.
However, with proper treatment and monitoring, people with Carney complex can have a normal life expectancy.
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Carney Complex vs. Carney Triad
Carney complex and Carney triad are two entirely separate conditions.
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Who Gets Carney Complex?
Carney complex is extremely rare.
Most people with Carney complex have a mutation in thePRKAR1Agene.
This can be passed from parents to offspring or can occur randomly.
Some people with Carney complex do not have this genetic mutation.
Start of Symptoms and Tumor Progression
The symptoms of Carney complex vary widely.
So does the progression of the disease.
Some symptoms are present from birth and often become more noticeable during the teen years.
People might not have all of the symptoms.
Discolored skin and pigmentation changesare often one of the first signs of Carney complex.
These are benign tumors, but they can still be very dangerous since they cancause heart disease.
Theres not one specific test to diagnose Carney complex.
That can lead to the development of Cushing syndrome.
PPNAD can occur on its own, or be triggered by Carney complex.
Treatment Effect on Life Expectancy
The life expectancy for someone with Carney complex is 5055 years.
However, most people with Carney complex die from complications from their tumors.
With regular management of the tumors, people with Carney complex can have a typical life expectancy.
Theres no set treatment for Carney complex.
Instead, treatments focus on alleviating symptoms.
Its important for people with Carney complex to work closely with a cardiologist.
Tumors can cause other symptoms too, depending on where they appear.
For example, tumors on the pituitary gland can cause excessive growth.
Tumor Recurrence
Oftentimes, people with Carney complex experience regrowth of their tumors.
If you have Carney complex youll work very closely with your healthcare team.
Summary
Carney complex is an extremely rare disease.
Fewer than 750 people have ever been diagnosed with it.
The condition is due to a genetic mutation that leads to skin discoloration and tumor growth throughout the body.
The most serious impact of this is cardiac disease, since tumors can grow in the heart.
However, with careful monitoring and proactive treatment, people with Carney complex can have a normal life expectancy.
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