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Congenital Adrenal Hyperplasia

Congenital Adrenal Hyperplasia
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Congenital adrenal hyperplasia (CAH) is a rare genetic condition that affects how adrenal glands create hormones. To make hormones, your adrenal glands use chemicals called enzymes. These enzymes combine with cholesterol to become the hormones cortisol, aldosterone and androgen.

Cortisol helps our bodies cope with stress and maintain appropriate blood sugar. Aldosterone helps maintain the right amounts of sodium and potassium in the body, regulating heart rhythm. Androgen hormones contribute to the development of male features.

If a child does not have enough of an enzyme, or the enzyme does not work correctly, then he or she may have too little cortisol and aldosterone and too much androgen. Depending on the severity of the hormone imbalance, children can have a wide range of symptoms, some of which are life-threatening.

The most severe form of CAH is classical congenital adrenal hyperplasia. Symptoms of classical CAH include:

  • Genitals that appear male (in girls)
  • Enlarged penis (in boys)
  • Abnormal heart rhythm
  • Dehydration
  • Low blood pressure
  • Vomiting
  • Shock

Another form of CAH is non-classical congenital adrenal hyperplasia. This form is not life-threatening. Some children may never have symptoms of the conditions, while others experience:

  • Growing body hair at a young age (younger than 8 for girls and 9 for boys)
  • Growing quickly at a young age
  • Oily hair and skin
  • Acne
  • Body odor as a young child
  • First period at an early age or irregular periods
  • Thick facial hair in girls or early beard growth in boys 
  • Infertility

Symptoms can get worse over time if not treated. Many conditions have similar symptoms to non-classical congenital adrenal hyperplasia, so you should seek out the care of an experienced doctor for an accurate diagnosis.

Diagnosis of Congenital Adrenal Hyperplasia

Babies are tested for classical CAH during newborn screenings. These screenings are extremely important since children with classical CAH may be at risk for sudden death.

Children with non-classical CAH may be diagnosed later in childhood or during adolescence. Blood tests can reveal imbalanced hormone levels that may lead to a diagnosis. Pediatric endocrinologists and pediatric urologists diagnose and treat both forms of CAH.

Treatments

Treatments

Congenital adrenal hyperplasia requires care from multiple pediatric specialists. Doctors at Riley at IU Health are internationally known for their treatment of congenital adrenal hyperplasia.

The Riley CAH Comprehensive Care Program includes:

  • Steroid therapy. Children will need to take medicine to balance their hormone levels and replace the hormones their body is not making. These hormones help control symptoms and allow children to grow normally. Your child’s pediatric endocrinologist will monitor your child's hormone levels and adjust his or her medicines appropriately.
  • Mental health support. This disease can be very stressful for family and patients. We provide a support system to help families cope with this disease.
  • Urological surgery. Girls with severe classical congenital adrenal hyperplasia may have genital anomalies such as an enlarged clitoris that may appear like a penis or labia that resemble a scrotum. Riley at IU Health urological surgeons have developed new, internationally recognized techniques to treat genital anomalies.

Key Points to Remember

Key Points to Remember

  • Congenital adrenal hyperplasia is a rare inherited condition that can lead to an imbalance in hormones produced by the adrenal gland.
  • Since some forms of congenital adrenal hyperplasia are life-threatening, all newborns in the United States are screened for the condition.
  • Some children with less severe forms of congenital adrenal hyperplasia may not show symptoms until later in childhood or into adolescence.
  • Congenital adrenal hyperplasia is treated with medicines that balance out hormones. Girls may also undergo surgery to treat genital anomalies.

Support Services & Resources

Support Services & Resources

Learn more about the diagnosis and treatment of congenital adrenal hyperplasia at the resources below.

Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.

Learn More About Riley Support Services

CARES Foundation

The CARES Foundation is the premier organization for support, education, advocacy and research of congenital adrenal hyperplasia. Their website offers information for both families and healthcare providers.

Congenital Adrenal Hyperplasia Research

Congenital Adrenal Hyperplasia Research

Doctors at Riley at IU Health have been leaders in CAH education and research for years. Current research projects include working with female patients and their families to determine the best approach to surgical care of genital anomalies in order for girls to experience the greatest psychological benefit and medical outcomes.

Departments Treating This Condition

Departments Treating This Condition

  • Congenital Adrenal Hyperplasia Program
  • Diabetes & Endocrinology
  • Urology
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