Estimated reading time: 4 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Growing up with congenital adrenal hyperplasia can bring some unique challenges, especially as you enter your teenage years. This is a time when your body is changing, and so is the way you manage your condition. Here is a simple guide to help you navigate this stage of life.
Understanding the Changes in Your Body
As you grow into your teen years, your body goes through puberty, which can bring new challenges if you have CAH. You might notice changes like:
- Hormone Levels: Puberty triggers a surge in hormones, which can affect your CAH. You might need adjustments in your medication to keep your hormone levels balanced.
- Physical Changes: Puberty brings physical changes, such as growth spurts, body hair, and in some cases, changes in genitalia. It’s normal to feel a little overwhelmed by these changes.
- Emotional Changes: Hormonal changes can also impact your emotions. You might feel more stressed, anxious, or moody. It’s important to talk about these feelings with someone you trust.
Managing Your Treatment
Treatment for CAH doesn’t stop when you reach your teenage years, but it may change. You’ve likely been taking medication since you were a child to help manage your hormone levels. As a teenager, your doctor might adjust the dosage to match your changing body. It’s important to take your medication as prescribed and to go to all of your appointments. At this stage you might need more regular check-ups or tests to monitor how your body is responding to treatment. Keeping up with these appointments helps make sure the treatment is working. Learning to take charge of your health is an important part of growing up. This means understanding your condition, knowing the signs that something might be wrong, and talking with your healthcare team about how you’re feeling.
Congenital adrenal hyperplasia (CAH) is a rare, lifelong genetic condition involving the adrenal glands.
Watch now: Understanding CAH: A guide to the basics
CAH affects three important hormones that help the body function: cortisol, aldosterone, and androgens. Cortisol manages the body's stress response, while aldosterone helps balance sodium and water levels, both of which also help regulate blood pressure. Androgens on the other hand impact growth, puberty, and reproduction.
Want to Learn More? Visit WhatTheCAH. Sponsored by Neurocrine Biosciences, Inc.
Common Obstacles
Living with CAH as a teenager can come with some specific challenges. You might feel more private about your condition as you get older. It’s okay to set boundaries and decide who you want to share your medical information with. Puberty can make you more aware of your body, and having CAH might make you feel different from your peers. Try to focus on what makes you unique and to reach out for support if you’re struggling with body image. As you become more independent, you might face peer pressure, whether it’s about skipping medication or doing things that could affect your health. Remember, it’s okay to say no and prioritize your health.
Staying Connected
You’re not alone in managing CAH. Here are some ways to stay connected and supported:
- Talk to Your Parents or Guardians: They’ve been with you on this journey since the beginning and can offer advice, support, and understanding.
- Connect with Others: Joining a support group for teens with CAH can help you meet others who understand what you’re going through. You can share experiences, ask questions, and support each other. There are also a few groups to know about: the MAGIC foundation and the CARES foundation. These advocacy groups can be tremendous resources.
- Reach Out to Your Medical Team: Your doctors, nurses, and counselors are there to help. Ask questions and express concerns about your treatment.
- Counseling: Regular counseling or therapy may be beneficial if you are struggling with body image, emotional changes, or the stress of dealing with a chronic condition.
As you move through your teenage years, managing CAH might seem like a lot, but remember, you’re gaining the tools and knowledge to take charge of your health. With the right support, you can navigate this time with confidence.