Living With Congenital Adrenal Hyperplasia

Reviewed by: HU Medical Review Board | Last reviewed: May 2024

Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a person’s life. With the right treatment plan, most people with CAH can navigate this condition and lead full lives.1,2

What is congenital adrenal hyperplasia?

CAH is a genetic disorder that affects the adrenal glands. The adrenal glands produce important hormones like cortisol and aldosterone. But in people with CAH, a mutation (change) in the gene disrupts the adrenal glands' hormone production. This leads to hormonal imbalances that impact the body in many ways.1

There are 2 types of CAH:1

  • Classic CAH – This is the more severe but also more rare type of CAH. Symptoms are typically present at birth, and lifelong treatment is necessary.
  • Nonclassic CAH – People with this type of CAH may not have any noticeable symptoms, or their symptoms may be mild. The severity of symptoms and the age of onset varies from person to person.

Gender differences in CAH diagnosis

CAH affects both males and females. But CAH may have a greater impact on quality of life in females than in males. One of the key features of CAH is its impact on sex characteristics. In females with CAH, too much of the hormone androgen can lead to physical symptoms such as:1,3

  • External genitals look different from what is typical. For example, the clitoris can be enlarged and look like a penis.
  • Deeper voice
  • More facial and body hair
  • Fertility issues

Males with CAH typically do not have significant changes to their external genitalia. However, both males and females with CAH may have other symptoms such as:1

  • Early puberty
  • Shorter-than-expected height
  • Severe acne

Living with CAH: From childhood to adulthood

Because CAH is a genetic condition, most people are born with it and live their whole lives with the condition.1,2

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For children with CAH, early diagnosis and treatment can help manage the condition. Children will also benefit from regular medical checkups – especially early in life – to monitor their growth and development and ensure their treatment is going well.2,4

Children with CAH often require lifelong hormone replacement therapy to manage their condition. This means taking certain medicines to reduce androgen production and increase other hormones like cortisol and aldosterone.1,4

Some female infants with CAH receive reconstructive surgery to make their external genitals look more typical. This surgery is usually done when a baby with CAH is about 3 to 6 months old. But this is a very personal family decision. Some parents may wait until their child is old enough to be a part of the decision-making process.4

For young children with CAH, bed-wetting may occur. This could mean that their medicine needs to be addressed. If your child has CAH and is wetting the bed, talk to their doctor about whether any changes need to be made to their medicine or the dosage.2

A child’s growth, height, and weight may be affected by CAH. If they are on steroid treatment, they can also have weight gain, especially during puberty. It may be helpful to have the guidance of a dietitian and a pediatric endocrinologist (a doctor who specializes in hormone regulation) to help manage weight.2

Caregivers of children with CAH

Parents and caregivers play a vital role in CAH diagnosis and treatment. For caregivers, managing a child’s CAH can involve:2

  • Regular check-ups with healthcare providers
  • Monitoring hormone levels
  • Staying on top of any signs of adrenal crisis, which is a life-threatening condition that can occur when cortisol levels drop too low

Despite this extra monitoring, most kids with CAH can expect to lead active and fulfilling lives.2

Many parents and caregivers eventually reach a time when they need to tell their child about their condition. Again, how this is done is a very personal decision. It will be different for everyone. But some people say that parents/caregivers should be the ones to tell a child about their diagnosis, rather than a doctor. Be open and welcoming of questions they may have. Be as honest and open as you can, and give them the support they need.2


Children with CAH transitioning to adulthood may require increased independence and the ability to manage their condition on their own. Adults with CAH must continue hormone replacement therapy and monitor their health closely. Adults with CAH may face other challenges down the road, especially fertility issues.1,2,4

If you are an adult with CAH, you will need to stay vigilant about protecting your health by:1,2,4

  • Taking medicines as prescribed.
  • Understanding the signs of adrenal crisis, a life-threatening condition with symptoms that include extreme weakness, drop in blood pressure, sudden drowsiness, and confusion. Get treatment as soon as possible if you have symptoms of adrenal crisis.
  • Maintaining a healthy lifestyle.
  • Stay vaccinated against preventable diseases.
  • Stay on top of blood sugar (glucose) levels.
  • Share any medicine side effects with your doctor.

Quality of life with CAH

Living with CAH can come with unique challenges that may impact quality of life. This depends on CAH symptoms and how much they interfere with daily life.3,5

For adults with CAH, a 2022 study found that females with the disorder have a poorer quality of life than males with CAH. The study found females were less satisfied with their body appearance largely due to the physical features of CAH on a female’s body.3,5

For children and young people with CAH, a 2023 study found that quality of life was better if their physical appearance was not greatly impacted. Also of note, when parents were asked what they thought their child’s quality of life was, they provided a lower score than what their children provided.6

Prioritize mental health

Coping with the physical symptoms, hormonal fluctuations, and potential challenges related to body image, sexuality, and fertility caused by CAH can take a toll on a person’s emotional well-being.

Mental health support and therapy can be very helpful for children and adults living with CAH as they navigate the complexities of living with a chronic medical condition. It can also be beneficial for caregivers. Therapy offers a safe space to process emotions, develop coping strategies, and address any mental distress or concerns.4

Connect with others and get support

Stay on top of your health and medical care, stick to your treatment plan, and communicate openly with your healthcare team. Connect with nonprofits and advocacy groups for valuable resources and a sense of belonging and support within the CAH community.

Here are some organizations that are dedicated to providing resources and support to the CAH community:

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