How to Manage Mental Health and Congenital Adrenal Hyperplasia

Congenital adrenal hyperplasia (CAH) is a group of inherited conditions in which the adrenal glands cannot make certain hormones, most commonly due to a deficiency of the enzyme 21-hydroxylase. This enzyme defect can lead to a shortage of the hormones cortisol and aldosterone, as well as an overproduction of androgens (male hormones). Milder forms may only have the latter. CAH can affect your body physically, but it can also come with a host of emotional issues, which can be particularly difficult for young people with the condition.

With the right support and a healthy routine, though, it’s possible to ease CAH stressors and improve well-being. Here’s how to protect your mental health — as well as your child’s, if they have CAH.

“The experience of living with CAH, whether as a parent or an individual, can evoke a complex mix of emotions and challenges, influencing everything from daily routines to social connections and mental health,” says Cindy Buchanan, PhD, a licensed clinical psychologist and associate professor of psychiatry and surgery at the University of Colorado School of Medicine in Denver.

Feelings of anxiety and frustration are common, due to the physical changes that accompany the condition, such as acne, early puberty, rapid growth, and excess facial and body hair in girls. The task of managing daily medications to treat CAH, along with the general fear of other possible health complications — shortened height in men and irregular periods plus male body traits and infertility in women — can also affect mental health.

“Other challenges for those with CAH include the fear of adrenal crisis, frustration, isolation, feelings of helplessness, and hypervigilance,” says Dr. Buchanan, who works with children managing chronic conditions such as CAH.

Findings from a study underscore these emotions, noting that young people can experience feelings of inadequacy and self-consciousness as they struggle to make friends or form romantic relationships, leading to sadness and even depression. On top of these struggles, children with CAH tend to miss school more often to attend medical appointments, which may then affect their academic success and potential job prospects down the road.

Parents of children with CAH have their own set of worries, as the genetic nature of CAH can contribute to self-blame. And, as with any chronic illness, a parent may feel emotional strain caused by frequent doctor visits, financial burdens due to medical treatments and missed work days, and familial guilt if their other children and partner receive less of their time and attention.

“Parents may also have concerns about their children’s future, including questions about fertility potential, the impact of hormone treatment on growth and development, and how their child will navigate social relationships and independence,” says Buchanan. “And they may fear making medical mistakes or worry about their child feeling different or isolated.”

But there’s a bright side to dealing with a condition such as CAH, too, she adds. Along the journey of managing CAH, “Many families and individuals also discover strengths, resilience, and empowerment through knowledge, increased family bonding, adaptability, a sense of mastery, connection, advocacy, and a deeper appreciation of their health and well-being.”

Whether you have CAH or your child does, experts agree that the right habits can go a long way toward addressing the complex emotions that come with it. Here are some strategies to try:

Find a support system. “Groups like the CARES Foundation, Accord Alliance, and InterConnect (formerly AIS-DSD) each offer different virtual and in-person events” says Buchanan. These resources “allow families to connect with others who understand the unique challenges of CAH, providing education and a sense of belonging,” she says.
Focus on healthy eating. Research shows that both adolescents and adults with CAH are at risk of obesity.
To help, eat a balanced diet that leans on fruits and veggies, rather than processed items and foods with trans fats. If you’re unsure how to start, a registered dietitian can assist with meal planning.
Practice relaxation techniques. Many serious illnesses can benefit from strengthening the mind-body connection.
Imagining a happy place, practicing intentional breathing, and repeating a mantra are just a few ways to bring calmness to a stressful medical situation. “Mindfulness or relaxation strategies can significantly reduce anxiety and improve overall well-being,” says Buchanan.
Get creative. Other activities that can help with stress relief for anyone with CAH include energy therapy (acupressure, acupuncture, Reiki), engaging with music (listening, singing, playing an instrument, dancing), gentle yoga poses, massage, and stretching.
Take care of yourself. Buchanan urges parents to remember that you “are not at fault for [your] child’s condition or for the feelings [you] experience as caregivers. And in some cases, the parents of a child with CAH may need to seek their own mental health support.”

It’s normal to feel frustrated or blue when faced with the physical symptoms of CAH, but it’s important to be on the lookout for signs of a significant shift in mood, whether it’s your own or your child’s. “Watch for persistent changes in sleep or appetite, any withdrawal from regular activities, difficulty concentrating, or intense worry about health. Be sure to seek professional mental support if these symptoms last more than two weeks or interfere with daily functioning,” says Buchanan.

“A behavioral health provider [such as a counselor, psychologist, or social worker] can work directly with children and teens to support healthy coping, self-esteem, and social confidence,” she says, “while also partnering with parents to address concerns and promote positive development at home.”

Prevention and a solid support system are key for protecting mental health. “Working with an interdisciplinary CAH care team that includes behavioral health providers allows for regular screening, early support, and the building of strong relationships, which helps families manage the emotional challenges proactively, rather than reactively,” says Buchanan. If a behavioral health provider is not part of your CAH team, “Search for a health or pediatric psychologist with expertise in both medical stressors and the treatment of these concerns,” she says.

Congenital adrenal hyperplasia (CAH) may cause mental health issues, such as anxiety, depression, and self-consciousness, both in people who have the condition and their caregivers.
Consider coping strategies to help ease the stress of CAH, such as engaging in hobbies, finding a support system, following a healthy diet, and practicing breathing techniques.
Be aware of your or your child’s level of sadness. Seek professional support if troublesome mental health symptoms worsen, last more than two weeks, or interfere with daily functioning.

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