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

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    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.
  • ADSHG Newsletter 133 – September 2018 By ADSHG

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    Addison's Disease Self-Help Group newsletter, issue 133, September 2018
      Welcome to the autumn 2018 edition of the ADSHG newsletter, with a refreshed, modern design. This new-look edition gives details of the forthcoming Special General Meeting and medical seminar, with messages from our Founder, the new Chair and the Treasurer. This issue also includes information on the prices of generic medicines and updates from ADSHG medical grant recipients. Additionally, Jane Hodgkins offers members helpful advice on how to reduce psychological stress and we report on ambulance awareness, fundraising events and social meetings.   Please note on page 6 of the online newsletter, we have included a clarification note from the Editor that is not available in the print copy: This article was contributed by Phillip Yeoh, who is one of our Trustees. The article should not be taken as medical advice, nor should it be taken as an endorsement by ADSHG for The London Clinic above other medical options open to readers.   This issue of the newsletter also contains the 2018 Christmas catalogue order form insert (included as an extra download file here), highlighting items and special offers available to purchase from our online Shop.   Page 2: Special General Meeting and medical seminar
    Editor's letter   Page 3: Letter from our Founder
    Deana's last column as President   Page 4: Message from the Chair
    ADSHG transformation programme   Page 5: View from our Treasurer
    Introduction to the editorial design team   Pages 6-7: An endocrine nurse specialist’s experience
    Starting a continuous hydrocortisone infusion pump service in my clinic Patients’ experience with the hydrocortisone pump   Page 8: Meet the Trustees - Andrew Glass
    Volunteering time to help the ADSHG
    Generic research - give blood   Page 9: Ambulance awareness
    Copycat ambo services - state of flux on ambulance scene
    Participation in the ULTRADIAN study   Page 10: Report on the third joint meeting of Addison’s Disease European Patients’ Organisations
    Call for volunteer speakers
    Renew your Medic Exempt card   Page 11: Coping with psychological stress
    Jane Hodgkin provides advice on how to reduce psychological stress   Pages 12-13: ADSHG grant recipient reports
    Three Award recipients provide an update on their areas of research   Pages 14-16: My perspective - stories from the Addison’s community
    Check that prescription!
    Run, Jennifer. Run!
    A medical emergency and my hospital stay
    An apple a day...   Page 17: IT@ADSHG
    Engagement of IT partner to facilitate core IT support
    Christmas 2018 special offers from the online Shop   Pages 18-19: Fundraising stories
    Cuppa and cake at Caernarfon
    Sam's Fundraiser Day
    Featherstone Kickboxing Club   Pages 20-21: Ask the expert - The prices of generic medicines
    Hydrocortisone prices at last coming down, but we need more help from you   Pages 22-23: Socials@Addisons
    Event calendar
    Social meetings and reports 
    Volunteers needed for endocrine conferences 2018   Page 24: The back page
    Subscription rates 2019
    Reminders 
    ADSHG Trustees, officers and volunteers
  • ADSHG Newsletter 134 - December 2018 By ADSHG

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    Addison's Disease Self-Help Group Newsletter 134, December 2018   Our latest members' newsletter is available for download. It's 24 pages packed with news, views and advice from the Addison's community - to the Addison's community.   Page 2 : Introduction to the Social Media Team A note from the Editor   Page 3 : Hello, my name is... Chris Pointon explains how his wife's experiences of palliative care drove this initiative   Page 4 : Introduction to the new CEO Message from the Chair, Andrew Glass MBE   Page 5 : Report from the Guest Speaker at the AGM, June 2018 Professor Rob Murray's talk about EU AIR (EU Adrenal Insufficiency Register) Newsletter front covers   Page 6 : View from our treasurer An update on our conversion to CIO (Charitable Incorporated Organisation)   Page 7 : Fundraising update - supprt from Google, Iomart and SM&B Meet the trustees Congratulations to Prof Wiebke Arlt   Page 8 : Emergency injection training Julie's ambulance awareness update Royal Free patient group   Page 9 : Minutes of SGM, November 2018   Page 10 : Addison's Ireland update Press releases   Page 11 : Volunteers wanted Medical research grants   Page 12 : Ask the experts   Page 13 : Pump problems   Page 14 : Stories from the Addison's community   Page 15 : Great Scottish Swim Adrenaline junkie?   Pages 16 & 17 & 18: Donations & fundraising   Pages 19 & 20 : Event calendar   Page 21 : 2019 subscriptions   Pages 22 & 23 : Spotlight on social media   Page 24 : Back cover Christmas card 2019 competition Contents and contact details  
  • ADSHG surgical guidelines By ACAP

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    The ADSHG surgical guidelines are intended for the information of your medical team or your dentist and have been developed for the ADSHG by our Clinical Advisory Panel.   They explain what level of extra medication and monitoring you will need in the event of most types of surgery or dental work. If you are having elective surgery in hospital, for example a hip operation, it would be sensible to give your surgeon and anaesthetist a copy of the guidelines well in advance of your surgery date. It is also advisable to take the guidelines with you when you go in to hospital and discuss them with your nursing staff, so that they are aware of the post-operative care you need.   These guidelines:   a. List the ten main types of surgical procedure, each requiring a different level of steroid cover   b. Specify the glucocorticoid medication and post-operative treatment requirements for each type of procedure in an easy-to-read table   c. Bring together the most up-to-date endocrine knowledge on cortisol replacement in the steroid-dependent patient   d. Reflect a prudent level of steroid cover that can safely be administered by non-endocrinologists.   These guidelines apply to all individuals who are steroid-dependent, so they are relevant to people with hypopituitarism as well as Addison's.   The leaflet is © ADSHG May 2017. 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.

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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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