Addison's Disease and adrenal insufficiency are lifelong conditions that require daily medication. This means that you will need to learn how to manage Addison’s day-to-day, yourself. Being well-informed will not only help you to look after your health but will also make you feel more confident and in control.

Get educated

We provide a wide range of publications and information to members.

• View all our free downloadable publications.
• Copies are also included in our postal membership, as part of your membership pack if you would like to receive copies straight to your door.

It can seem overwhelming but reading our publications is a great place to start. Our publications contain the key points that everyone with Addison's needs to know to manage their health and will help address any questions or concerns you may have. So why not get started now - here are the links to some of our publications, which we think can be a great introduction to learning more.

• Managing Your Addison's Disease
• Children's & Young People Guides
• Making the most of your appointments 

Read our book: In 2019, in response to members feedback the ADSHG released our first book - "Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals" which is available to buy worldwide on Amazon. This book brings together practical day-to-day hints and tips about Addison's, as well as explaining more about medication, your endocrinology team and quality of life.

The Addison's community has fed back the reassurance having the book nearby brings so they are able to easily look up any questions they may have, especially when managing symptoms such as brain fog. Others say they have taken it to their hospital appointments to help discussions or to have as a reference when explaining certain situations with loved ones.

Magazine: we also learn so much from the shared experiences of others. In our magazine, we share personal experience stories from our community, as well as the latest news, research and healthy living advice. Learn more about receiving our magazine.

Get medical alert jewellery or ID & carry a steroid card

Steroid Card: Because you have to take steroid medications every day of your life, you will need to carry a steroid card, which identifies to healthcare providers that your medication cannot be stopped. There are different steroid cards available.

• NHS Steroid Emergency Card (Adult): if you have not already been provided with the card, view our NHS Steroid Emergency Card guide to find out more about ordering and how to keep a digital copy on your phone. This card and its associated guidance is intended for use by adults (16+)
• ADSHG Adrenal Crisis Emergency Wallet Card: you can also purchase the charity emergency wallet card from our online shop. This contains advice authored by the ADSHG clinical advisory panel on the treatment required to prevent an adrenal crisis in the event of serious injury or illness. 
• The BSPED Paediatric Steroid Treatment Card for Adrenal Insufficiency: provides a succinct steroid management plan for illnesses, emergency injections and blood sugar and electrolyte correction for children and young people. The card is available to download direct from the BSPED website.
  

Learn more about steroid emergency cards

Medical Jewellery: There are a number of companies that offer different forms of medical ID or jewellery designed to alert medics to your medical condition in case of emergency. Medical identification should contain information about your diagnosis and medication needs.

For those getting engraved identification, from companies such as MedicAlert, ICE ID or Medi Tag, without other medical conditions requiring priority attention in an emergency, the suggested wording is along the lines of: “Addison’s disease (adrenal insufficiency). Steroid-dependent.” This will alert health care professionals to look for your steroid emergency card, which has space for more detailed information about you, including your name and next of kin.

Medical identification come in lots of different designs so there is something to suit everyone. It’s advisable to choose a design that is easily identifiable as being a medical alert item. Our online shop also sells steroid alert wristbands.

Carrying a steroid card and wearing medical jewellery are vital steps to keep you safe. They provide life-saving information should you become seriously ill or unconscious and are unable to communicate your health problems effectively. So make sure to pop your steroid card in your wallet or purse and wear your jewellery daily! These simple but important steps can help give you peace of mind should you become unwell and support your independence. 

Hydrocortisone Injection Kit

After diagnosis, you should be issued with a prescription for the medication required for a hydrocortisone emergency injection kit. This will include vials of hydrocortisone that either you or a friend or family member can administer if you are vomiting and unable to absorb oral tablets, or showing other signs of severe illness. Learn more by visiting our injection page.

Watch: The ADSHG have a YouTube channel which includes 'how to' hydrocortisone injection videos, personal stories from the Addison's community and an educational video on adrenal crisis narrated by Professor John Wass.

Have you seen our #ShareYourKit campaign? We’ve been asking you to share your kits with us on our online forum, by email or tagging us in your pictures on social media using #ShareYourKit. We've been able to share these brilliant examples in our magazine and social media, to show how the Addison’s community store and travel with their kits and medication. This reminds and encourages us all to keep our kits with us at all times and normalise this potentially scary situation. So search the hashtag to see all the different kits shared on Twitter and Instagram, as well as on our blog!

Remembering to take your tablets

Taking your replacement glucocorticoid medication at the right time every day - or extra medication quickly when you are unwell or injured - is essential. If you struggle to remember to take your medication, you're not alone! But this can lead to unpleasant side effects, ineffective treatment and put you at risk of adrenal crisis.

But life is busy! So we've asked the Addison's community what are their top tips for tablet time. Here are some ways to manage your meds and make it part of your routine:

• Smartwatch: watches such as Fitbits and Apple Watches allow you to set discreet vibrating alarms. Being on your wrist, these are great for making sure you don’t miss a dose due to distraction in a lesson or work meeting or not being near a clock.
• Apps: Apps allow you to note your medication, to help you keep track of your doses throughout the day. Our two favourite apps are:
  • Medisafe - one of the #1 apps for tracking medication available, you can sync with your family so they know when you're late taking a dose and also set repeat prescription reminders. The app can be downloaded for free for Android and Apple devices. 
  • My Cortisol – developed by Great Ormond Street Hospital endocrine nurses, this is a free app to help with emergency care of young people with cortisol deficiency - click here for more information.
• Dossette box: these boxes are handy ways to store your medication. Choosing the right one depends on your needs. So have a look on Google, Amazon or pharmacies like Boots.
• On our online shop we offer a "pill pocket" which fits easily into a jean pocket, or school pencil case. This can be a great way of keeping extra medication on you at all times.

Remember carrying your medication and injection kit is similar to an asthmatic always carrying their inhaler and a diabetic carrying their insulin. It allows you to increase your dose if needed, in response to the unexpected demands of daily life. For more ideas on storing your medication read more about our #ShareYourKit campaign and watch our #ShareYourKit Instagram highlight.

What do I do if I've missed a dose?

If in doubt, take your dose again. If you take more of your replacement glucocorticoid medication than you need for a short period, it will do no harm. There is no known toxic dose of hydrocortisone. Read more in our 'Managing Your Addison's' publication.

However if you do not take sufficient extra medication you will feel pretty grotty (which nobody wants!) but may then go on to experience an adrenal crisis if your cortisol levels remain low. So if you miss a dose or can't remember if you've taken your dose, it is far safer to take extra medication as a precaution and then start using one of the memory aids we've recommended above.

Be kind to yourself

Each person’s experience of being diagnosed with Addison’s is different; it can be a stressful and confusing time both for the person diagnosed and those close to them. Try to look after yourself and give yourself time to digest the information about your diagnosis.

The ADSHG online forum can be a reassuring place to share your concerns and questions with others. Others also share their experiences with us on our blog. Everyone experiences Addison's and adrenal insufficiency differently when diagnosed, depending on other health conditions they may have. So take each day as it comes, find the best balance of daily medication for your body and know our charity and the Addison's community are here for you.

To receive the latest expert advice, guidance and ADSHG news join our charity to become a member. 

Say hello! Follow us on Twitter, Facebook, Instagram, LinkedIn and YouTube.