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LIFE HACKS & TIPS

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LIFE HACKS FOR LIVING WITH CAH

CAH may add extra wrinkles—or real challenges—to new adventures. But whether it's sleepaway camp, study abroad, or moving to another city, some preparation can make it all go a little more smoothly.

EXPLAINING CAH TO OTHERS

Whether talking to friends, coworkers, or teachers, explaining CAH to others can be a challenge. If you're tired of going through it all yet again, share this video for an easy-to-follow (really!) introduction to CAH.

Length: 3:10

Understanding CAH: A Guide to the Basics

[Adult VO 1 — female, 35-45]

One of my students this year has a condition I’m not familiar with. It’s called CAH.

[Adult VO 2 — male, early 30s]

A guy on my team at work told me he has CAH—I haven’t heard of it before.

[Adult VO 3 — female, early-mid 20s]

My new roommate let me know she has CAH.

[Adult VO 2 — male]

Wait. What is CAH?

[Narrator VO]

CAH, or congenital adrenal hyperplasia, is a rare, lifelong, genetic, condition.

CAH is usually detected at birth. In the United States, all newborns are now tested for CAH to help prevent complications and even death.

[Adult VO 3 — female]

It sounds serious.

[Narrator VO]

It is. But there are treatments that can help manage it and enable people with CAH to focus on living their lives.

[Adult 2 VO — male]

So, what does CAH mean for someone who has it?

[Narrator VO]

Well, CAH affects three important hormones that help our bodies function: cortisol, aldosterone, and androgens.

We all need cortisol to stay alive. It’s sometimes called the stress hormone, because your body makes extra when needed, like when you’re ill or you overexert yourself. Cortisol also regulates your metabolism. Together, cortisol and aldosterone help your body maintain a healthy blood pressure.

But in people with CAH, the body doesn’t make enough cortisol and aldosterone.

[Adult VO 2 — male]

We’re all under the weather from time to time. But my coworker says that when he’s feeling bad, it could be a sign of something much worse, especially if he feels nauseated, very weak, or dizzy.

[Narrator VO]

That’s right – for those with CAH, feeling unwell could be a warning for what’s called adrenal crisis—this is the life-threatening part of CAH, and it happens in situations when the body needs more cortisol than it’s able to make. There’s an emergency injection in case adrenal crisis happens.

[Adult VO 1 — female]

I carry that for my student on field trips. You also mentioned androgens – what do those have to do with CAH?

[Narrator VO]

As a result of not having enough cortisol due to CAH, the body makes too many androgens. Androgens affect growth and reproductive health, but having too many can disrupt these processes in the body.

[Adult VO 3 — female]

My roommate says CAH makes her periods irregular, and that it might be harder for her to get pregnant because of her CAH.

[Narrator VO]

That’s right – fertility for both men and women can be impacted due to CAH. In kids, excess androgens can cause symptoms like early puberty and acne.

[Adult VO 3 — female]

I’m so glad to know all this. Besides the emergency injection, what other treatments are available?

[Narrator VO]

Prescription steroids called glucocorticoids and mineralocorticoids are used to replace cortisol and aldosterone. Sometimes higher doses of glucocorticoids are needed to help reduce excess androgens. However, these higher doses have drawbacks – they can cause side effects, some of them serious, such as weight gain, bone density issues, diabetes and even depression.

It’s a lot to balance. Not just physically, but emotionally too.

[Adult VO 1 — female]

Wow, I had no idea my student …

[Adult VO 2 — male]

…my coworker …

[Adult VO 3 — female]

…my friend …

[Adult VO 1 — female]

…was dealing with this. I’m glad to know the basics, so I can help if necessary.

[Adult VO 2 — male]

It makes me feel like I can be there for them.

[Narrator VO]

Fortunately, we are learning more about CAH every day. And there are organizations that support the CAH community through advocacy and education.

CAH can be frustrating, but a supportive community could make it just a little bit easier.

TALKING ABOUT CAH

Looking for more help with explaining CAH? Download Talking About CAH for tips to help guide your convos.

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COMMON LIFE SITUATIONS

Tips for handling everyday moments with CAH—whether you're a caregiver, a teen, or managing your own care.
FOR KIDS & CAREGIVERS
Support for growing independence, early conversations, and preparing for what's ahead.

MAKING THE MOVE TO AN ADULT ENDOCRINOLOGIST

We know that switching doctors can feel like a big deal. Download this checklist to help prepare for the move to adult care.

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FOR TEENS & ADULTS
Tools for navigating transitions, relationships, and sustained well-being.
FOR EVERYONE
Everyday tips that apply no matter your age or where you are on the journey.

Looking for tips from people with real-life CAH experience?

Check out our ambassador advice column.

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