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Addison’s disease (hypoadrenalism or adrenal insufficiency) is a rare condition where the adrenal glands cease to function and replacement medication is required.

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    ADSHG Newsletter 129 - September 2017 is now online!

     

    The ADSHG newsletter is issued to members four times a year in March, June, September and December. It's a key membership benefit of the ADSHG and a great way to get the latest updates on Addison's research, treatment and daily management, with additional news from the group and stories from our members.

    Each edition of the newsletter brings you a quarterly update on the Group's activities, what we are doing to support you, along with the in depth articles on the latest medical advice for managing Addison's disease and personal stories from Group members about their experiences.
     
    The newsletter has been published online since September 2005 and the current newsletter along with a full archive of over 50 newsletters is available for download by group members here...
     
    To receive the newsletter, you need to join the ADSHG. The newsletter is printed and posted to our postal members and also made available for download to all our members via our website. Key articles from the newsletter are also made available to the public as appropriate. The newsletter is subject to ADSHG's copyright and must not be forwarded to non-members or copied or posted on other websites. Please enjoy reading the newsletter and do feel free to copy it for personal use or to share with your medical team.
     
    To give you an idea of the style, layout and quality of information in the newsletter some example pages from the ADSHG Newsletter 120 - June 2015 are shown below.
     


    ADSHG

    By ADSHG, in Ways to give,

    You can make an immediate donation to the ADSHG's work, here using JustGiving, choosing to make your donation to either of the two purposed appeals the charity maintains, or to make a general donation to our work.

    All donations, no matter how large or small, are much appreciated and valued by the ADSHG and go towards funding our work to support members and people with adrenal insufficiency and towards promoting better understanding of this rare condition amongst health professionals. Here are some comments from community donors, as expressed on our main Just Giving appeal.
     
    "This group is without doubt a life-saver"
    "Thank you ADSHG for all the advice and support you provide"
    "The support they provide is very special"
    "I am happy to find your site...Now I will be safer!"
     
    General donations page - this appeal funds our day-to-day work which includes providing support to members with Addison's disease through meetings, publications and our newsletter and promoting better understanding of this rare conditions amongst health professionals. General donations page
     
    Emergency injection video appeal - this appeal is to fund our video education series, which provide vital information and emergency injection techniques and other information relevant to people with adrenal insufficiency. Emergency injection video appeal
     
    Medical research grant fund - this appeal is to provide funds for support for applied medical research and the advancement of good clinical and nursing practice. Medical research grant fund
     
    Donating direct from your bank
    If you wish to make a donation towards the ADSHG's work as a bank-to-bank transfer rather than through our Just Giving appeal pages, please contact the group on donations@addisons.org.uk
     
    If you wish to send a cheque, please direct it to:
     
    Deana Kenward
    ADSHG President
    PO Box 1083
    Guildford
    GU1 9HX

    ADSHG

    The ADSHG has produced a video to hear first hand from our members and their families about their own experiences of giving an emergency injection during an adrenal crisis.

    In this video, you will hear from ADSHG members Deana (with her son, Daniel), Debbie, Frances, Ian and Tag, who discuss their experiences of giving themselves or a family member an emergency injection of hydrocortisone. Our thanks to them all for sharing their stories with us.
     
     

    You can purchase the emergency injection kit (minus the drug preparations) featured in this video from the ADSHG web shop.
     
    We also have further films in our video hub that provide step-by-step instructions on how to give an emergency injection during an adrenal crisis using different types of medication and equipment. Viewers may be interested to learn that Deana is, in fact, Deana Kenward and the president and founder of the ADSHG.
     
    Our videos are free for all to view, but if you would like to make a donation to the ADSHG to cover our remaining production costs, please visit our JustGiving page.
     
     
     

    This video was produced by Frank Films and part-funded by a Society for Endocrinology patient support grant.

    ADSHG

    In an emergency, anyone who is steroid-dependent, whether from Addison's or from other causes, can experience symptoms of extreme weakness, a serious drop in blood pressure and mental confusion. This means they need extra steroid medication immediately, and are likely to need an emergency injection of IM hydrocortisone 100mg.

    People with Addison’s (or other forms of steroid-dependence) who increase their oral medication according to the 'sick day rules' usually manage their illnesses smoothly, without going into adrenal crisis. But in cases of vomiting or shock,they can experience a sudden drop in blood pressure.
     
    Anyone who is steroid-dependent needs to take extra steroid medication whenever they are sick or injured and before any kind of surgery. The general guidelines for extra steroid cover are:
    Double the normal dose of hydrocortisone for a fever of more than 37.5º C or for infection/sepsis requiring antibiotics. For severe nausea (often with headache), take 20mg hydrocortisone and sip rehydration/electrolyte fluids. On vomiting, use the emergency injection (100mg hydrocortisone) immediately. Then call a doctor, saying 'steroid-dependent patient', 'adrenal crisis' or 'Addison’s emergency'. Take 20mg hydrocortisone orally immediately for serious injury to avoid shock. Ensure your anaesthetist and surgical team, dentist or endoscopist are aware of your need for extra medication and that they have checked the ADSHG surgical guidelines for the correct level of steroid cover. It is advisable to take the ADSHG’s hospital pack (containing drugs chart stickers and other medical information) with you each time you go to hospital, for either emergency or elective treatment.
    If you do not take sufficient extra steroid medication early enough in the course of an infection or injury, you may experience an adrenal crisis. Adrenal crisis is a state of acute cortisol shortage with similar symptoms to the pre-diagnosis illness. Warning signs include:
    severe nausea headache dizziness extreme weakness chills or fever confusion.
    If you feel severely unwell, take extra steroid medication then call a doctor, saying steroid-dependent patient, adrenal crisis or Addison’s emergency.

    An emergency injection of 100mg hydrocortisone, followed by immediate medical attention, is needed for an adrenal crisis. Depending on the severity of your symptoms, once the injection has been given, it's advisable to call 999 or call your GP. Depending on the severity of the infection, some individuals may deteriorate rapidly even after early self-injection with 100mg hydrocortisone IM. Hospital treatment may be required for 24 - 72 hours. Postural dizziness is a key indicator that IV fluids are necessary, usually requiring hospital admission.
     
    Potentially life-threatening circulatory complications ranging from hypotension to hypovolaemic shock may occur if there are any delays in treating adrenal crisis. In extreme cases, if treatment is not obtained, this can lead to death.
     
    Ambulance crews and GPs are advised that the acutely unwell patient should be stabilised by a saline infusion (for volume repletion) and a 100mg hydrocortisone injection before transportation to hospital. Any patient experiencing adrenal crisis should ideallly be transported flat and head first, especially when going down stairs. However, this may not be practical in some buildings and, if a carry chair is needed, the patient should be stabilised first as indicated above before being moved.
     
    GPs are encouraged to ensure that steroid-dependent patients are given high priority for after hours or home visits when unwell, and that the ADSHG emergency treatment and surgical guidelines have been scanned into the patient’s notes.
     
    Commentary from:
    Managing your Addison's
    Caring for the Addison's patient: information for GPs.
     
    Further reading:
    Clinical Knowledge Summaries, Addison’s disease. Husebye ES et al. 2014 Consensus statement on the diagnosis, treatment and follow-up of patients with primary adrenal insufficiency, J Intern Med. 275:104-15. Napier C & Pearce SH. 2014 Current and emerging therapies for Addison’s disease. Curr Opin Endocrinol Diabetes Obes. 21:147-53. Bancos I et al. 2015 Diagnosis and management of adrenal insufficiency. Lancet Diabetes Endocrinol, 3:216-26. Arlt W. 2015 Adrenal Insufficiency: patient information sheet. Society for Endocrinology

    ADSHG

    The Addison’s Disease Self-Help Group, with the support and guidance of its Clinical Advisory Panel, publishes free education materials for people with Addison's and those interested in learning more about the condition.

    The publications that explain what Addison's is or raise awareness of the condition are listed here and they are available for free download in our publications centre. Print copies of these publications (except those indicated) are also available to purchase from our online shop as part of the ADSHG information pack (item 304).
     
     
     

    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.
     
    Read more about this publication and download it...
     

    What is Addison’s? – A3 colour poster
    This A3 colour poster is a companion product to the education booklet, 'What is Addison’s?', which was written with school projects in mind and provides some basic information on the condition.
     
    Read more about this publication and download it...
     
    A printed copy of this item is not included in new postal members' pack or the information pack in our shop.

    About the Addison’s Disease Self-Help Group
    This information leaflet provides some background details on the activities of the organisation, what we do and how we work. It also contains some information on the history of Addison's disease.
     
    Read more about this publication and download it...
     
     
     

    ADSHG medical lectures and seminars 2004 – 2010
    ADSHG medical and seminars document contains all the slide presentation summaries from the ADSHG seminars and lectures from 2004 to 2010 presented by leading medics in the field of adrenal insufficiency.
     
    Read more about this publication and download it...
     
    A printed copy of this item is not included in new postal members' pack or the information pack in our shop.
     

    ADSHG 25th anniversary publication
    This special anniversary report from 2009 celebrates the 25th anniversary of the ADSHG. It follows the story of the group from when it was first started by our President, Deana Kenward, on her kitchen table in 1984 with just 50 members up until our 25th anniversary in 2009, when the group was now a registered charity, almost 1,300 members strong.
     
    Read more about this publication and download it...
     
    A printed copy of this item is not included in new postal members' pack or the information pack in our shop.
     

    A4 publicity poster
    This poster can be offered to outpatients units at hospitals or GP’s waiting rooms or used at your fundraising events. If you have access to colour printing, please print it in colour as it is more eye-catching.
     
    Read more about this publication and download it...
     
     
     

    Publications for people with Addison's disease
    The Addison’s Disease Self-Help Group, with the support and guidance of its Clinical Advisory Panel, publishes free education materials for people with Addison's regarding the treatment and day-to-day management of Addison's. These publications are available as free downloads and it is important that people with the condition read these publications.
     
    View the list of publications for people with Addison's disease...
     

    Publications for healthcare professionals
    Clinical guidance publications have been developed by the ADSHG Clinical Advisory Panel to inform and advise your healthcare professions. These publications are available as free downloads and you should ensure your healthcare professionals are provided with these important publications.
     
    View the list of clinical guidance publications...

    ADSHG

    This section describes how to give an emergency injection of injectable hydrocortisone for adrenal crisis prevention. The explanations use videos and illustrated guides to describe how to prepare and administer the injections and are relevant for work colleagues, family and friends as well as self-injection.

    The descriptions provide practical guidance for the various drug preparations and syringe types which are available within the UK, along with links to the ADSHG emergency injection kits available in our online shop.
     
     
    Liquid hydrocortisone sodium phosphate (1ml ampoule) emergency injection instructions
     
    This page provides practical instructions for the liquid hydrocortisone sodium phosphate drug preparation along with links to the ADSHG emergency injection kits available in the online shop.
     
    Read this emergency injection page here ...
     
     
    Powder and water (Solu-Cortef) emergency injection instructions
     
    This page provides practical instructions for the Solu-Cortef drug preparation along with links to the ADSHG emergency injection kits available in the online shop.
     
    Read this emergency injection page here ...
     
     
    Act-o-Vial (integrated vial Solu-Cortef powder and water) injection instructions
     
    This page provides practical instructions for the Act-o-Vial Solu-Cortef drug preparation along with links to the ADSHG emergency injection kits available in the online shop.
     
    Read this emergency injection page here ...
     

    Additional foreign language resources:  
    A Dutch language video demonstrating self-injection with the Act-o-Vial form of Solu-Cortef can be viewed here... It follows a slightly different technique to that taught in the UK and uses the longer, green IM needles that would usually only be recommended for people with a larger BMI, >30, in the UK. This video was produced by the Radboud University Hospital endocrine department, Nijmegen, Netherlands. The Dutch support group, NVACP, has also produced a cartoon video explaining how to use the Act-o-Vial form of injectable hydrocortisone.
     
    The Act-o-Vial drug preparation is not available in the UK, but can be obtained on prescription in a number of EU states (Germany, France, Netherlands, Denmark) as well as in North America. It is not available in Spain or Portugal.
     
    Foreign language translations of the ADSHG emergency guidelines are available here.

    Liquid hydrocortisone sodium phosphate (1ml ampoule) emergency inject instructions
     
    3.1 How to give an emergency injection: liquid hydrocortisone using a safety syringe
     

    This video explains how to give an emergency injection of liquid hydrocortisone using a retractable safety syringe in the event of an adrenal crisis. It is narrated by Prof John Wass, Chair of our Clinical Advisory Panel, with injection demonstration performed by consultant endocrine nurse, Phillip Yeoh.
     
    3.2 How to give an emergency injection: liquid hydrocortisone using a standard syringe
     
     
    This video explains how to give an emergency injection of liquid hydrocortisone using a standard syringe in the event of an adrenal crisis. It is narrated by Prof John Wass, Chair of our Clinical Advisory Panel, with injection demonstration performed by consultant endocrine nurse, Phillip Yeoh
     
    Emergency injections: tips and reminders
     
     
    Hydrocortisone emergency injection: illustrated instructions
     
    This leaflet details how to give an emergency injection of hydrocortisone sodium phosphate (liquid hydrocortisone) is available for free download here...
     

    The ADSHG emergency injection instructions are supplied as part of the emergency injection kits and refill packs in our shop (see below).
     
    ADSHG emergency injection kits
     
    A range of emergency injection kits for both adults and children is available from our online shop. Each kit contains retracting safety syringes, Amp snaps and concertina photo instructions in a sturdy, handle-lidded box. You can purchase emergency injection kits (minus the drug preparations) from our online shop.
     
     
    ADSHG adult emergency injection kit - large case
     

    Further reading
    Page 3 - Powder and water (Solu-Cortef) emergency inject instructions
    Page 4 - Act-o-Vial (integrated vial Solu-Cortef powder and water) injection instructions
    Video hub - Full set of Emergency injection videos
     

    Powder and water (Solu-Cortef) emergency inject instructions
    3.3 How to give an emergency injection of Solu-Cortef with a retracting safety syringe
     

    3.4. How to give an emergency injection of Solu-Cortef with a standard syringe
     

    Solu-Cortef© emergency injection: illustrated instructions
     
    This leaflet details how to give an emergency injection of Solu-Cortef© is available for free download here...
     

    The ADSHG emergency injection instructions are supplied as part of the emergency injection kits and refill packs in our shop (see below).
     
    ADSHG emergency injection kits
     
    A range of emergency injection kits for both adults and children is available from our online shop. Each kit contains retracting safety syringes, Amp snaps and concertina photo instructions in a sturdy, handle-lidded box. You can purchase emergency injection kits (minus the drug preparations) from our online shop.
     
     
    ADSHG adult emergency injection kit - large case

    Further reading
    Page 2 - Liquid hydrocortisone sodium phosphate (1ml ampoule) emergency inject instructions
    Page 4 - Act-o-Vial (integrated vial Solu-Cortef powder and water) injection instructions
    Video hub - Full set of Emergency injection videos
     

    Act-o-Vial (integrated vial Solu-Cortef powder and water) injection instructions
     
    The Act-o-Vial is not available in the UK as the product distributed in Europe contains a banned additive, benzyl alcohol. However, it is now the standard form of injectable hydrocortisone sodium succinate distributed by Pfizer, the licence holder, in North America, Australasia and mainland Europe. The product distributed in North America does not contain benzyl alcohol and some private clinics are importing this formulation to the UK. We publish these photo instructions on our website, for the benefit of our overseas members or anyone who has obtained a private prescription for an Act-o-Vial within the UK.
     
    3.5 How to give an emergency injection of Solu-Cortef, Act-o-Vial with a retracting safety syringe
     

    Solu-Cortef© the Act-o-Vial© emergency injection: illustrated instructions
     
    We publish the following photo instructions on our website, for the benefit of our overseas members or anyone who has obtained a private prescription for an Act-o-Vial within the UK.
     

    Please note that the ADSHG does not issue paper copies of the Act-o-Vial instructions with the injection kits on sale in the ADSHG online shop (see below).
     
    ADSHG emergency injection kits
     
    A range of emergency injection kits for both adults and children is available from our online shop. Each kit contains retracting safety syringes, Amp snaps and concertina photo instructions in a sturdy, handle-lidded box. You can purchase emergency injection kits (minus the drug preparations) from our online shop.
     
     
    ADSHG adult emergency injection kit - large case
     

    Further reading
    Page 2 - Liquid hydrocortisone sodium phosphate (1ml ampoule) emergency inject instructions
    Page 3 - Powder and water (Solu-Cortef) emergency inject instructions
    Video hub - Full set of Emergency injection videos

    ADSHG

    Membership of Addison's Ireland is open to anyone in Northern or Southern Ireland with Addison's or other forms of adrenal insufficiency that result in steroid dependence. Family members, friends or anyone with an interest in adrenal medicine are also welcome. You can join as an e-member receiving your material electronically through the website or as a postal member.

    Aims of the Addison's Ireland
    Addison's Ireland focuses on health-related issues specific to the Republic of Ireland, where the health services and other state supports differ from the UK, and aims to encourage greater medical awareness of our needs within the Irish health care system and supported by the Addison's Ireland Clinical Advisory Panel (AICAP).
     
    Joining Addison's Ireland
    Please join the ADSHG in the usual way and those based in the Northern or Southern Ireland,will automatically become a member of Addison's Ireland too. You can join at any time of year and will receive contact details for the Addison's Ireland Co-ordinator Linda Grealy when you join the ADSHG.
     
     
    Join the ADSHG.
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