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

Preparing your own Emergency Kit for Addison's or Adrenal Insufficiency - 16/04/2021

Preparing an emergency kit is something every person with Addison's or Adrenal Insufficiency should do once they have a diagnosis. Kits are sometimes provided ready-made by medics and can also be purchased online. Here we help you create your own emergency kit in seven steps.
Useful links to other organisations

This section provides electronic links to the websites of other organisations in the UK and around the world that provide support and information to people with Addison's and adrenal insufficiency. As many people with Addison's also live with other autoimmune conditions too, we have included some links to relevant patient groups for these conditions.
Novel Coronavirus (COVID-19) - 16/04/2021

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.
Becca’s positive pants 10 mile walk

To show how far I’ve come since my diagnosis nearly 3 years ago... from not being able to stand in the shower let alone walk 10 miles.

Addison's SOS - Sanctuary of Support

Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency Here when you feel lost, concerned, puzzled or poorly.

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!
New Video: Managing medication and COVID-19 - 29/03/2020

In our latest video, ADSHG Trustee and Professor of Endocrinology explains how to manage your medication should you get ill in the coming weeks.
Behind the News: Hydrocortisone as a Covid-19 Treatment - 09/12/2020

In recent days, UK news networks have been sharing a story about new studies hailing Hydrocortisone as a Covid-19 treatment. We asked our medics to review the research and the emerging stories so that we can give you a balanced perspective while also updating you on any impacts to the drug supplies we depend on.
ADSHG in The Guardian - Rare Diseases edition!

We are delighted that our article "Think Addison's disease - save a life", is featured in today's Guardian newspaper Rare Diseases supplement!
Receiving the COVID-19 Vaccine - Personal Stories

The COVID-19 vaccination campaign has kicked off - but what does it feel like to receive the COVID-19 vaccine? People with Addison's and adrenal insufficiency share their experiences of receiving the vaccine.
New UK Rare Diseases Framework launched

On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole?
Research Update - Professor Arlt's Perspective - 17/03/2020

In 2017, Weibke Arlt, a member of our Clinical Advisory Panel, published research about Addison's and natural killer cells. In recent weeks, it's gone viral in light of the COVID-19 outbreak. We asked her to give her perspectives on what that means for us. She kindly tweeted her responses yesterday.
Easing lockdown: How are you feeling? - 10/5/2020

It's important to remember you're not alone in experiencing a range of emotions after adapting to lockdown life.
[Superceded] EJE Guidance: Managing Adrenal Insufficiency in the time of COVID-19 - 21/04/2020

the European Journal of Endocrinology (EJE) editoral board has commissioned a new guidance series for the management of endocrine conditions during COVID-19. Included within this is clinical guidance for the management of Addison's disease and adrenal insufficiency. Here we take a look at this vital new guidance, so you can get a clearer view of what this means for you or your loved ones.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine 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.

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