Be Prepared - resources to help you 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. Below we talk you through: Knowledge is power - become an "expert patient" Medical alert jewellery/ identification Steroid cards Hydrocortisone injection kits GP, Hospital & Ambulance care Remembering to take your tablets Emotional health - be kind to yourself Knowledge is power - become an "expert patient" 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 Welcome 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 and adrenal insufficiency 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 Working with your GP Read our book: "Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals" is available to buy on our Shop and also 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 and adrenal insufficiency 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, without other medical conditions requiring priority attention in an emergency, the suggested wording is: “Adrenal insufficiency. Steroid-dependent.” If space, you may choose to add: "at risk of adrenal crisis." If you have Addison's disease, it is important to include "adrenal insufficiency" on your medical ID and the suggested wording is: "Adrenal insufficiency (Addison's disease). Steroid-dependent". The term "adrenal insufficiency", which includes primary (Addison's), secondary and tertiary, is the term used in both the NICE Guidelines for healthcare professionals and the JRCALC ambulance guidelines. Therefore some healthcare professionals are not familiar with the term "Addison's" whereas they are aware of "adrenal insufficiency" due to the reference to the adrenals. This will alert healthcare 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 comes 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. Companies our community use include MedicAlert, ICE ID, Medi Tag or Butler & Grace (where ADSHG members receive a 10% discount), Our online shop also sells steroid alert wristbands. Charity steroid alert wristbands Shop medical alert keyrings Carrying a steroid card, wearing medical jewellery or carrying medical ID 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. Medical Tattoos Increasingly people are using tattoos to show that they have adrenal insufficiency, including Addison's, and are steroid-dependent. It is recommended that these tattoos are not used in place of a medical alert identification, but in addition to medical jewellery and your steroid alert card. Healthcare professionals cannot rely on medical tattoos alone when treating a patient in an emergency. While a tattoo stating a medical condition may act as a helpful prompt, it is not considered an official or reliable form of medical identification. If you are unable to communicate, there is no way of confirming whether the information is current or accurate and tattoos may be missed or misinterpreted in high-pressure situations. This is why medic alert identification (such as the steroid alert card or jewellery) should always include your name. Read more in the "The Doctor's View" and learn from our communities' experiences of tattoos. 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, 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 our 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 X/Twitter and Instagram, as well as on our blog! Shop Kits Through our online charity shop, we offer different kit storage options, including spare needles, syringes, and printed copies of our 'how to' picture instructions. #ShareYourKit See how others store and travel with their emergency hydrocortison injection kits. What is the Emergency Injection? On our main injection page, we explain what the emergency hydrocortisone injection kit is, how to inject and how important it is to use the injection during an adrenal crisis. GP, Hospital & Ambulance Care Addison's and adrenal insufficiency are rare, and are 'invisible conditions'. You are likely to come across healthcare professionals who have not treated someone with adrenal insufficiency before. This can feel frustrating as well as scary as you need to help educate them and guide them to information. We have resources you can take or have prepared for these healthcare professionals to help improve your care - from edcucation modules for GPs, hospital packs, and how to check your Summary Care Record for access by paramedics. Click the links below to find out more. GP Care Hospital Care Summary Care Record 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 and adrenal insufficiency 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 and pillbox keyring which fits easily into pockets, or school pencil case. This can be a great way of keeping extra medication on you at all times. Written reminders: some people prefer pen and paper! So why not draw a tick chart for your week and put it on your fridge with one of our medical alert fridge magnets. Then you can tick off each dose alongside your meals. Or keep on your desk where you can see it easily. This can be great for young children by introducing stickers to make it a fun reward system too! 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. Emotional health - be kind to yourself Each person’s experience of being diagnosed with Addison’s and adrenal insufficiency 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. Take each day as it comes, find the best balance of daily medication for your body and know our charity and the community are here for you. Explore the resources below for more support. Stress, Addison's & adrenal insufficiency Stress impacts our health, making symptoms harder to manage. Read our article for more support, including dosing advice. Blog Hear the personal experiences from others with Addison's and adrenal insufficiency, and those who support them. Online Forum Speak with others who just 'get it'! A welcoming space to share experiences, ask questions and discuss the practicalities of living with Addison's and adrenal insufficiency. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Connect on social media! 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