Information for patients

The Addison’s Disease Self-Help Group, with the support and guidance of its Clinical Advisory Panel, publishes a range of education materials for people with Addison's regarding the treatment and management of their condition.

These resources complement the charity's extensive range of publications for healthcare professionals.

Living With Addison's Disease : A Guide For People With Addison's, Supporters & Professionals

Everything you wanted to know about living with Addison's - but were afraid to ask. This ground-breaking, unique book covers a wide range of aspects of Addison's from both a medical and patient perspective. From causes, diagnosis, treatment options, how to work with your doctors through to advice for navigating life's journey including sports/active life, pregnancy, the menopause. Co-authored by Professor Simon Pearce and Sarah Spain, the book marries evidence-based clinical best practice with the practical day-to-day hints & tips to not just survive, but thrive with Addison's Disease. Highly recommended!

The book is available in paperback and for Kindle at Amazon, globally.

Buy At Amazon

Emergency Wallet Card

The adrenal crisis emergency wallet card is credit card sized and 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. It is available in printed form and is sent free to every member when they become a member. Additional cards can be bought in our shop.

Adrenal Crisis Care Letter

This adrenal crisis letter gives emergency medical treatment guidance for paramedics or hospital staff in the event of a person with Addison's suffering an adrenal crisis. This letter should be signed by your doctor. This document is also available in eight foreign languages for those who live or travel abroad.

Personal Emergency Plan

This Personal Medical Emergency Plan template is a useful way of summarising your personal medical needs in the event of an emergency, for friends, family or work colleagues.

Medical Summary Form

This medical summary form is an easy way to record the medications you are currently taking.

Drugs Chart Steroid Stickers

The ADSHG drugs chart steroid alert stickers are intended for people with Addison's to take with them for day case and inpatient surgical procedures to alert nursing and medical staff to their steroid-dependence and their time-critical need for steroid medication when unwell.

Practical Advice

These articles provide practical advice for people with Addison's Disease

Managing Your Addison's Disease

This leaflet, Managing Addison's disease, has been developed for the ADSHG by our Clinical Advisory Panel. It provides a summary of the key points everyone with Addison's needs to know to manage their health. It is designed primarily to assist those who have been recently diagnosed and is ideal for hospitals and endocrinology units to give to their patients with Addison's.

When An Employee Has Addison's : information For Employers

The 'When an employee has Addison's' leaflet was written to help people with Addison's disease who are newly diagnosed – or changing jobs – to explain their condition to an employer. It was written by members of the ADSHG with input from our Clinical Advisory Panel.

What Is Addison's Educational Booklet

This educational booklet, 'What is Addison’s?' was written with school projects in mind and provides some basic information on the condition. It gives a little history of Addison’s, from its discovery by Dr Thomas Addison in 1855, through the scientific and medical advances that occurred in the twentieth century, concluding with an overview of what life is like today for people with Addison’s.

Latest

Jennifer's fundraising for Addison's disease

I'm raising money for the Addison's Disease Self Help Group so that they can continue to support people with Addison's and adrenal insufficiency. Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.
Behind the Research: U-RHYTHM

Dr Thomas Upton updates us on the development of U-RHYTHM, a wearable device to measure hormones, including cortisol levels, in the body over the full 24 hours, following the release of their clinical trial study,
Behind the Research: The PULSES trial - Pulsatile Cortisol Infusion Pump

Dr Georgina Russell updates us on The PULSES trial, looking at the effect of pulsatile cortisol pump therapy on quality of life, mood, sleep, behavioural and cognitive processing and metabolism.
Getting the Flu Jab

Say No to Flu! Book your flu jab today. There is no need to miss out, as it is free to people who are steroid-dependent (everyone with Addison's disease and adrenal insufficiency). Dr Prete, Consultant Endocrinologist, explains more about the importance of getting your flu jab when you are steroid-dependent.

Sick Day Rules

Minor ailments can affect anyone with a steroid-dependent adrenal condition very differently. Things like vomiting, diarrhoea, colds and flu could cause an adrenal crisis. It’s important that you spot the early symptoms of a bug or cold and adjust your steroid replacement medication.
What is Addison's Disease?

Find out more about Addison's disease and adrenal insufficiency and and how they are treated.
Adrenal Crisis Can Kill
The Emergency Injection for the treatment of Adrenal Crisis

Understanding what an Emergency Injection kit is, how to inject and how important it is to use the injection during an Adrenal Crisis.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine and boosters to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.
Why Salt?

Why do people with Addison’s and adrenal insufficiency crave salty, acidic and sour foods at diagnosis, and then salt remains our “pick me up” when diagnosed? Professor Simon Pearce explains the connection between aldosterone, fludrocortisone and why you should always listen to your salt cravings.
Novel Coronavirus (COVID-19) - 02/10/2023

Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.
Updated NHS Steroid Card Released

Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!
Addison's & Adrenal Insufficiency: Advice for Dentists

The ADSHG guidelines offer illustrative guidance for major and minor dental procedures. It is important to recognise the physical stress of any invasive dental procedure and to ensure that adequate glucocorticoid cover is provided for steroid-dependent patients.
Surgical Guidelines

The ADSHG surgical guidelines are intended for the information of your medical team or your dentist and have been developed by our Clinical Advisory Panel.

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more