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Living with Addison's

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How to mange and live with Addison's disease

4 files

  1. Free

    Managing your Addison's

    This 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.



  2. Free

    When a student has Addison's: a guide for schools and parents

    The 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 booklet 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.
    Print copies are available in the online Shop on this link.



  3. Free

    When an employee has Addison's: employers leaflet

    The 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   6. 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.



  4. Free

    Personal Medical Emergency Plan (Template)

    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. Simply download the document (it's in Word format) and customise according to your needs.
    This document has been reviewed and approved by Professor Simon Pearce, our ADSHG Trustee and member of our Clinical Advisory Panel. Our thanks to member Suzanne Smith for suggesting this resource and putting it together for review.



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About us

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.The group was formed in 1984 and is a UK registered charity no. 1179825.

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