It can come as a shock when you are diagnosed with Addison's or adrenal insufficiency. If you're new to Addison's, there is lots of practical information and support available for free on our Newly Diagnosed page.

We're here to support you alongside your healthcare team. Don’t be afraid to ask your healthcare team questions and ask for support, you need to understand what Addison's or adrenal insufficiency is and how to look after it too. 

Below are some resources which we hope will answer any questions you may have and guide you in taking on the adjustments a diagnosis requires. 

The essentials

Managing Addison's or adrenal insufficiency can be challenging, but we’re here to support you. It might take a while for you to recognise your body's warning signs of illness or insufficient medication. You can read more about What is Addison's here. This is why it is key you keep the following 4 items on you, as a person living with steroid dependency, at all times: 

  1. Hydrocortisone medication,
  2. Emergency hydrocortisone injection kit,
  3. Medical jewellery, and
  4. Steroid alert card.

>> Read more about these items here

School and higher education

Adding in the management of Addison’s when moving into higher education or taking on important exams can seem a bit daunting. When living with an ‘invisible’ condition such as Addison’s, it is vital to consider how you can balance your medication to maintain stability alongside enjoying the student lifestyle and having fun. Just because people can’t see your health condition doesn’t mean it isn’t real. Be careful in what you do, and listen to your body.

Our booklet 'When a student has Addison's: a guide for schools and parents' was written to help young people with Addison's who are in education to explain the condition, considerations needed and support required by a school or educational establishment.

>> Download : When A Student Has Addison's : A Guide For Schools & Parents

>> On our blog, Thanooshan speaks about his experience "My law degree or my Addison's Disease?"

Here's some top tips for getting organised for university and moving city.

  • 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 so you could tell them you have Addison's and find out what support you might be entitled to. Remember, telling your uni about Addison's 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 or DSA. This is a scheme that helps you cover some of the extra costs you might have because of a long-term illness.
  • Chat with your new friends about Addison's, 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, medic-alert bracelet, NHS steroid card and 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 stress. Don’t underestimate the effects of work stress on your body. The academic side of university can be intense, and you’re there to do your best. Plan ahead, taking into consideration 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 take extra medication if you are staying up late so putting extra demands on your body and cortisol levels.
  • 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, thus not disrupting your evening. Learn more about hydrocortisone injection kits here.

Need to talk? Online forum

On our members forum we have a specific "Young People and their Families" section, where you can discuss any specific issues, vent or get advice when you need it in a private, safe space. 

Read through posts left by others or start your own topic to receive advice and support. The forum is a great place to gain new knowledge through the experiences of others and to ask any questions you might have as you grow up.

>> Visit our online forum

Blog

You are not alone in your experiences. As well as in our members magazine, over on our blog we feature posts written by people living with Addison's and adrenal insufficiency. Some have the condition themselves, others have someone in their lives who is steroid-dependent.

>> Visit our blog

Social Media

Follow us on social media! You might find it helpful to chat, find support and discuss issues with others, as well as discover more about our campaigns, information and activities.

>> You can find us on Facebook, TwitterInstagramYouTube, and LinkedIn.

We also host regular Twitter Chats where we ask an expert panel, made up of endocrine professionals as well as expert patients, your questions around a specific topic. Previous topics you might find helpful include:

You can catch up on all the previous conversations via the hashtag #AddisonsQA on Twitter.

Looking for more information? Check out the links below:

We have more information coming soon for Young Adults. Contact us if there are any topics you would like to see on our Young Adults page.

Further resources

RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.

Split into kids (under 12 years old) and young adult (teens to 25), RARE Youth has something for all young people and is a great support site to know you are not alone in your diagnosis of a rare condition; there is a brilliant and empowering rare disease community out there for you.

In 2019 following requests from our members, we were delighted to release "Living with Addison's disease", a book which brings evidence-based clinical best practice with practical day-to-day hints and tips for those with Addison's and adrenal insufficiency.

The book is available on Amazon to allow for worldwide shipping and is free on Kindle.

The book includes a section on "Children and Young Adults with Addison's" as well covering lots of essential information about the condition.

The book won commended in the 2019 British Medical Association (BMA) Patient Information Awards! You read more about the award in our news item here.

You & Your Hormones is an education resource developed and managed by the Society for Endocrinology. You & Your Hormones breaks down the different topics around Addison's disease and adrenal insufficiency into glands, hormones and endocrine conditions. This great resource allows you to learn more about the condition and answer more specific questions you might have.