By ADSHGLiving with Addison's disease – an owner's manual for individuals with the condition
This guide has been co-written by Sarah Baker and Katherine White, members of the UK Addison’s Disease Self-Help Group, in collaboration with endocrinologist, Professor John Wass. It aims to provide you with sufficient information to allow you to work well with your doctors in fine-tuning steroid replacement therapy and in making informed choices about some of the practicalities of managing the condition.
The Owner's manual was published in 2000, before the formation of the group’s Clinical Advisory Panel. It written by members of the ADSHG with guidance from Prof John Wass and remains a popular introduction to living with Addison’s.
Some of the medical information it was based on has been superseded by more recent research and many of the references it contains are now out of date. Current guidance on clinical best practice from the Addison's Clinical Advisory Panel (ACAP) can be found in the following publications which we encourage you to read alongside the owner's manual.
ADSHG emergency crisis guidelines ADSHG surgical guidelines Euroadrenal consensus statement on the diagnosis, treatment and follow-up of patients with primary adrenal insufficiency [external link] Managing your Addison’s Caring for the patient with Addison’s: information for GPs Diagnosing Addison’s: a GP's guide Nursing the Addison's patient: notes for nurses
Useful information on day-to-day living with Addison’s can also be found in:
When an employee has Addison’s: employer’s guide When a student has Addison’s: a guide for schools and parents
This booklet is © ADSHG May 2003. It may be copied for personal use or by medical practitioners for the education of their patients. Otherwise it should not be reproduced without written permission of the ADSHG.
By ACAPThis ADSHG 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.
The leaflet covers the following information:
What is Addison's disease? How is Addison's disease diagnosed? How is Addison's disease treated? What do I need to know about managing my medication? Are there any special precautions I will need to take? What could go wrong if I don't take enough medication? What kind of medical support and monitoring will I need? What kind of quality of life can I expect? Can I have children? What about sport and exercise? Are there any long-term side effects from my medication? Why is it called Addison's disease?
The Addison’s Clinical Advisory Panel (ACAP) is a group of endocrinologists with an interest in adrenal medicine. It advises the ADSHG on medical matters. This leaflet has been authored by: Prof John Wass Churchill Hospital, Oxford, Dr Trevor Howlett Leicester Royal Infirmary, Prof Wiebke Arlt University Hospital, Birmingham Prof Simon Pearce Royal Victoria Infirmary, Newcastle Prof John Monson St Bartholomew’s Hospital, London.
The leaflet is © ADSHG May 2014. It may be copied for personal use or by medical practitioners for the education of their patients. Otherwise it should not be reproduced without written permission of the ADSHG.
By ADSHGThe ADSHG 'When an employee has Addison's' leaflet was written to help those newly diagnosed – or changing jobs – to explain their condition to an employer.
This leaflet was developed jointly by:
Ian Carswell, Sue Chambers, Sue Downey, Alyson Elliott, Siobhan Haskey, Nigel Ingham, Siobhan Tolland and Katherine White. Our thanks to Professors John Wass, Simon Pearce, Wiebke Arlt and Dr Trevor Howlett of the Addison’s Clinical Advisory Panel for their guidance and input.
The leaflet covers the following information:
1. How Addison’s may affect people at work 2. Ongoing symptoms 3. Adrenal crisis 4. Time off work 5. Addison’s and disability law 6. Possible adjustments 7. Supporting an employee with Addison’s
The leaflet is © ADSHG September 2015. Copyright permission will not be unreasonably withheld and 'personal use' can be assumed to cover copies related to the personal employment circumstances of an individual.
By ADSHGThe ADSHG booklet 'When a student has Addison's: a guide for schools and parents' was written to help young people with Addison's who are in education to explain the condition, considerations needed and support required by a school or educational establishment.
This leaflet was developed jointly by ADSHG members Sue Chambers, Debbie Heaton and Katherine White. The ADSHG also wishes to thank Juliet Edwards, Jennifer Billingham, Sue Elford and Lindsey Farrow for reviewing the content.
The booklet covers the following information:
1. What is Addison's 2. Day to day symptoms 3. Managing medication and fluids 4. Medical jewellery and other documentation 5. The Individual Healthcare Plan 6. Absences and support for education missed 7. Outside the classroom: school trips and sports 8. Exam arrangements 9. Transition to another school 10. Responding to sickness, injury and emergencies 11. Legislative guidance and further information 12. Suggested Individual Healthcare Plan template 13. Other essential contacts
Our thanks to Professors John Wass, Simon Pearce, Wiebke Arlt, Dr Trevor Howlett and consultant endocrine nurse Phillip Yeoh of the Addison’s Clinical Advisory Panel for their guidance and input.
This leaflet is © ADSHG December 2015. It may be copied for educational or personal use or by medical practitioners for the education of their patients. Otherwise, it should not be reproduced without written permission from the ADSHG.