Managing adrenal insufficiency (an invisible condition) and potentially other conditions alongside your adrenal insufficiency, can be challenging, but we’re here to support you. It might take a while for you and the people around you to adjust to your condition - be patient with yourselves.
Congenital Adrenal Hyperplasia (the leading cause of adrenal insufficiency in children), Addison's disease and other types of adrenal insufficiency can be quite complicated to manage, as our endocrine (hormone) systems use complicated and sensitive 'feedback' loops that constantly adjust to what our bodies need.
As time goes on, you will learn to 'listen' to your body, and you will start to recognise when you don't feel 'right'. This is often when your body has less cortisol than it needs, which can happen if you miss or are late with your medication, or if you are not well for another reason.
Where do I start?
- Read about your condition in our leaflet 'What are Addison's and Adrenal Insufficiency'. This gives you a summary of what you need to know about the cause of your condition, how it is treated, and how it might affect you day-to-day. It will also help explain adrenal crisis and why it is important to manage your condition carefully to try to avoid having one!
Learning about your condition will help you stay healthy and help you to do the things you want to, safely. Share this leaflet far and wide so others understand your condition too!
For specific and more detailed information about CAH or adrenal leukodystrophy, please explore the relevant patient support groups for those conditions:
Alex, The Leukodystrophy Charity (Alex TLC)
Read the Adrenal Insufficiency Action Plan: This is a short leaflet that uses traffic light colours to explain your treatment on a 'normal day' (green), a day when you are feeling unwell (amber) and in the situation where you have an adrenal crisis (red). It is another great leaflet to help others understand your needs, especially teachers or your GP, who might not come across adrenal insufficiency very often.
Explore our website, particularly the pages for people who have only just been diagnosed, and our pages on daily replacement medication and Sick Day Rules (times when you need to increase your medication). Some of the information is quite detailed, so you may want to ask your parents or your doctor if you need support to understand something better.
- Be prepared by keeping the following items with you at all times. They will help you manage your condition and help others to better understand what you need. It can feel 'restricted' to HAVE to do something, but following this guidance will keep you healthier, with more energy, so it is absolutely worth it!
Your daily steroid replacement medication (hydrocortisone).
This needs to include what you need for your daily dose, plus some extra in case you need to follow Sick Day Rules, or in case you lose some!
An emergency injection kit for you or someone else to use to give you an injection of hydrocortisone if necessary, to prevent or to treat an adrenal crisis.
Don't go anywhere without it - it can save your life!
Steroid Emergency Cards & Medical ID jewellery - these help others to recognise that you have adrenal insufficiency and that you are 'steroid-dependent' i.e. you need to take your replacement steroid medication on time, every time.
Making others aware of your condition
Managing your medication
You can read all about the type of daily medication you will be given and how it works in our Medication section (click on the link below).
Your medication is what is known as 'time-critical'. That means you need to ALWAYS TAKE IT ON TIME. This is because it directly replaces the cortisol that your body is missing, and which it can't do without.
Below, we give you some practical advice, including how to make sure you don't miss a dose!
Is it just me?
It can feel lonely having an invisible health condition, but you are not alone!
Visit our Famous Lives page to read about celebrities, sportspeople and politicians who have lived with Addison's and other types of adrenal insufficiency, to gain insight and inspiration!
Other ways to connect with people who share your condition are through our charity.
Explore our social media
You can find us on Facebook, X/Twitter, Instagram, YouTube, and LinkedIn.
Webinars & events
We have previously hosted webinars discussing growing up, balancing school, friends, uni plans (and everything in between) for young people (13-18 years), and separately, for parents and under-12's.
Keep an eye on our Events page for future webinars, or get in touch to let us know if this is something you would be interested in us hosting again.
How do I cope at secondary school?
In August 2026, we launched a pack of resources for young people with Addison's/adrenal insufficiency, of secondary school age. Have a read yourself and share them with your parents and teachers.
In them, we talk about everything from:
- remembering and managing your medication
- catching up after being off school
- your independent healthcare plan
- managing exams
- wanting to do the Duke of Edinburgh's Award
- telling your friends
Explore our Secondary School Resources
Moving away to College or University
Having Addison's/adrenal insufficiency does not mean you can't continue your education and go on to college or university. However, there are extra things you need to consider and plan for, to make sure you stay safe and healthy.
Read Thanooshan's Story: 'My law degree or my Addison's disease'
- Move your care:
Get registered with a GP in your new city and set up an appointment to meet your new GP.
- Contact student support at your university:
Tell them you have Addison’s or adrenal insufficiency and find out what support you might be entitled to. Remember, telling your university about your condition doesn't mean it defines you. It just makes you safer and lets you enjoy everything student life has to offer.
- Apply for the Disability Students Allowance (DSA):
This is a scheme that helps you cover some of the extra costs you might have because of a long-term illness. Apply for DSA.
- Make your friends aware:
Chat with your new friends about your condition, how it affects you, what they might need to watch out for and what to do if you have an adrenal crisis.
- Day-to-day life:
Make sure you have a bag which can easily hold your key Addison's items for when you're out and about. A pill pocket, medical alert bracelet, NHS steroid card and an emergency hydrocortisone injection kit are vital items to always have on you.
- Alcohol:
There is no reason why you can't enjoy alcohol responsibly. But know your limits and avoid that ‘dirty pint’. Yes, no one likes a party pooper, but no one likes a self-induced adrenal crisis either. Vomiting is a trigger for adrenal crisis, so be aware and responsible for your own health.
- Work/Study stress:
Don’t underestimate the effects of work stress on your body. The academic side of college or university can be intense, and you’re there to do your best. Plan ahead, remembering that your pace might not be the same as your peers i.e. the infamous all-nighters people pull the night before the big deadline may not be as manageable for you. Listen to your body and consider taking extra medication if you are staying up late and putting extra demands on your body and cortisol levels.
- Nights out - be prepared:
The odd bouncer on a night out may contest the tablets and injection kit you have in your bag or pocket. Do not let this dissuade you from carrying them with you at all times. You may never need them - but if you do, you couldn’t live without them. Just have your explanation prepared so you can rattle it off at a moment’s notice, and not disrupt your evening.
