About Addison's Disease Newly diagnosed? Newly diagnosed? We are here to help. Newly diagnosed with Addison's disease or adrenal insufficiency? We are here to help. In the weeks and months following your diagnosis, you, and the people close to you, will have lots of questions about your condition and what it means for your future. You may feel confused about where to start and unsure of where you can get information and support. This is where we can help - it is one of our main priorities as a charity, and we have been doing it for 40 years. So please scroll down to learn more about how you can manage your condition and your physical and emotional wellbeing. We have put our information in an order that reflects the priorities and worries which our readers and members have shared with us. Medication Each day people with Addison's disease and adrenal insufficiency need to take a combination of tablets to replace the missing hormones. People can need quite different doses of these tablets, and this depends on body size, age and level of activity. Your endocrinologist will have a reasonable idea of a good starting dose for you, and then your medication can be fine-tuned over a few weeks and months to get you feeling as good as possible. This might involve taking your medication at slightly different times of day, as well as changing the dose. Your replacement medication dose is individual to you, and you will learn to listen to your body, giving your body what it needs each day, as you do with food and water. Even once you are established on a regime of medication that suits you, it is possible for this to change over time. You will need to be seen regularly (normally once or twice each year) by your endocrinology team to keep an eye on how you feel. Learn more about Addison's and adrenal insufficiency Knowledge is Power... Get Ready! Diagnosis can stir a range of emotions from relief to fear. It's important to learn as much as you can about the condition - this knowledge is likely to make you feel more confident, and it may save your life. Learn about the resources created to support you, from medic alert wristbands and steroid emergency cards to hydrocortisone injection kits #ShareYourKit!. We sell a small range of medic alert products in our shop, for delivery to UK addresses. Take a look to see if there is anything there that might help you feel more confident in raising awareness about your diagnosis. Newly Diagnosed? Get Ready! Adrenal crisis can kill - be prepared Around 8% of people with Addison's disease experience an adrenal crisis each year; some people more frequently than others. It's vitally important that you learn the signs of an impending crisis and what to do in this medical emergency, and to share your knowledge with those closest to you. What Is Adrenal Crisis Emergency Advice Understanding "Sick Day Rules": how 'minor' ailments can have serious consequences Physical and emotional stress affects your cortisol levels and how you look after your condition. People with Addison's and adrenal insufficiency are particularly vulnerable to adrenal crises being triggered by seemingly "minor" ailments (physical stressors), including vomiting, diarrhoea, colds and flu. It's important to recognise the early symptoms of a bug or cold and adjust your steroid replacement medication accordingly. Sick Day Rules It can be harder to judge when we need to increase our steroid replacement medication when feeling emotionally or psychologically challenged. What could be a significant stress for one person may be completely manageable to someone else. You will learn to consider stressful situations on a case-by-case basis and whether you need to take a “top-up” dose. Coping with Psychological Stress Working with your doctor & paramedics As Addison’s is a rare condition, your GP may never have treated a patient with this before. The ambulance services in United Kingdom and Ireland are continually improving their support of people with Addison's, thanks to the lobbying and advocacy of our charity and its volunteers over recent years. You may need to help share information you learn, to help contribute to you getting the best care. Please make use of the information we have pulled together to help you get the best out of your health providers. Working with your GP Practice Paramedic Information & calling 999 Be kind to yourself Having Addison's disease or adrenal insufficiency to manage on top of life’s normal ups and downs can, in itself, be stressful. These articles provide practical advice for people with Addison's disease, particularly in the important weeks following diagnosis. Reducing the stress of a long-term condition Rare Minds Wellbeing Hub - resources and information to support mental health and covers all aspects of living with a rare condition with sections dedicated to diagnosis, uncertainty, change and loss, relationships, feelings, healthcare navigation and many other challenges. So just how do you tell your family & friends Words for feeling better - or worse Help Yourself... & Others: Become a member The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland. We aim to support our members to manage their condition and to promote better medical understanding of Addison's, working in co-operation with leading adrenal specialists and the Primary & Secondary Health care community. By joining as a member, you get access to a range of additional resources and support for your condition. You'll also be joining a vibrant, supportive, engaged community of people affected by Addison's. Together we will improve the lives of those with Addison's disease and adrenal insufficiency! Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. Join Us Manage Cookie Preferences