Other Congenital Adrenal Hyperplasia FAQs

Basic information for topics, such as “What is it?” is available in the About Congenital Adrenal Hyperplasia section. Answers to other frequently asked questions (FAQs) specific to congenital adrenal hyperplasia are in this section.

Yes, children with CAH can attend day care and school. Before enrolling children in day care, parents should explain that the child has adrenal insufficiency, which might require the administration of emergency medication. Parents should discuss the day care provider's policy on giving medications to children. They should also provide a set of written instructions, as well as a list of emergency contact names and numbers.

Before a child starts school, parents should consider meeting with the teacher, principal, and school nurse to explain the child's condition. Parents can also discuss precautions to take if the child becomes ill.

Anyone with CAH, or from a family in which CAH has been diagnosed, should consider genetic counseling. Genetic counselors discuss all options for having a child. They explain the risks and benefits of each option.

The genes for CAH are passed down from parents to their children. In general, people have two copies of every gene in their bodies. They receive one copy from each parent. For an infant to have CAH, both copies must have an error that affects an adrenal-gland enzyme.

CAH is an example of an autosomal recessive disorder:

  • Autosomal means the gene is not on the X chromosome or Y chromosome.
  • Recessive means that both copies of the gene must have the error for the disease or disorder to occur.

If both parents have CAH, all of their children also will have it. If each parent carries one affected gene and one normal gene, there is a one in four chance of a child having CAH.

View a picture that shows how CAH is passed down from parents to children.

For Women

Women with CAH can get pregnant. In some of the women, high levels of androgens disrupt the regular release of the egg from the ovary, a process known as ovulation (pronounced ov-yuh-LEY-shun). Some women also have irregular menstrual cycles. These problems can make it more difficult to get pregnant. These women often can be helped with medicines. Women with CAH who want to become pregnant can meet with a reproductive endocrinologist (pronounced en-doh-kruh-NOL-uh-jist). This is a health care provider who specializes in fertility issues.

Women with CAH who become pregnant should continue taking their medications.

For Men

Men with CAH can father children. The main challenges for these men are low testosterone (a hormone important for male fertility and sexual function), and growths in the testicles called adrenal rest tissue. These problems can cause reduced sperm production. These issues tend to occur when hormone imbalances are not well controlled with medicines. Men who wish to father children should take all medicines as directed. A health care provider may recommend that males with CAH who have gone through puberty get an ultrasound of the testicles. The ultrasound provides a picture of the inside of the testicle and can help a health care provider detect abnormal growths. Future ultrasounds can be compared with the original to quickly identify any problems.

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