Jump to content
  • ADSHG-join_us_articles.pngJoining the ADSHG & member benefits

    Membership of the ADSHG is open to anyone with Addison's or other forms of adrenal insufficiency that result in steroid dependence, family members, friends or anyone with an interest adrenal medicine.

     

    Learn more about joining the ADSHG & member benefits....

Articles

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

    ADSHG

    Concordia, the supplier of hydrocortisone sodium phosphate, has confirmed that it has stopped manufacture until Q3 2018 due to difficulties in sourcing the active ingredient for its liquid injectable hydrocortisone. 

    The company confirms that it has almost run out of remaining warehoused stocks of 1ml ampoules of hydrocortisone sodium phosphate and that it expects it will be unable to resume supply until Q3 2018. 
     
    A similar manufacturing problem in Q4 2014 was not resolved until Q3 2015, when the former branded product Efcortesol was relaunched as the current generic. The previous licence holder, Amdipharm, has since been taken over by Concordia, a Canadian-headquartered generic drug producer.
     
    Once the remaining warehoused stocks have been depleted, anyone who needs to renew their injection kit materials will have to ask their GP to issue a prescription for the alternative form of injectable hydrocortisone: 
    hydrocortisone sodium succinate (Solu-Cortef) 100mg powder, with a 2ml ampoule of solvent (sterile water) members outside the UK (Ireland, Europe and Americas) may also be able to obtain the Act-o-Vial preparation, containing hydrocortisone sodium succinate and water in a chambered ampoule.  
    Guidance for GPs on what to prescribe can be found in the ADSHG’s GP Care leaflet.
     
    Video instructions for how to prepare the Solu-Cortef powder and water can be viewed online and written guidance is also available on the website here...
     
    As any further information becomes available, we will update members in the member-only online forum.
     

    ADSHG

    Featuring in the September 2017 newsletter, one of our members, Rachel, tells the story of how her friend and former ADSHG trustee Sue Chambers undertook the challenge of producing and publishing a charity cookbook for the ADSHG.

    About this time two years ago, my friend Sue Chambers began work on a charity cookbook for ADSHG. The thought was that the recipes would be mostly gluten and/or dairy free and low sugar, for those among us who have dietary issues and other conditions alongside Addison’s. The idea was that we would seek recipes from both our members and “names” from within the health sector. It was as much about raising awareness of the condition as about a financially viable recipe book.
     
    Awareness-raising as a goal
    At the time Sue was recovering from chemotherapy, which she underwent for triple negative breast cancer. Her lowered immune resistance from the chemotherapy meant she could no longer take public transport with any confidence and could not return to work as an early years consultant, so she felt a bit stuck at home.The cookery book was a project that other trustees had contemplated previously, but had not managed to bring to fruition. Sue is a keen cook and has many published articles, books and research projects for the Early Years sector. She was able to bring a personal passion to it, as well as the background experience to see it through to publication. Like everything else she commits to, Sue threw herself into the task. She fired off multiple eloquent requests via email, pursuing ambulance trust chief executives, dieticians and endocrinologists with links to ADSHG. She also took the time to trial various recipes at home, to make sure they could be adapted as gluten free.
     
    Lightbulb moment
    Just after Christmas at the end of 2015, Sue and I were chatting about the book and we had a lightbulb moment; we would see if we could get some celebrity chefs to give us their favourite recipes to use in the book. This would make the book more marketable and intriguing. Sue did the lion’s share. Altogether, I believe she sent around 2000 emails, including one to each of the political party leaders in the UK! We emailed publishers, TV companies, restaurants, fan clubs, direct message tweeted and variously pursued several celebs in the UK, Ireland and worldwide for their input. It was always such a buzz when we got a response. Most of the celebs who responded were curious to hear about Addison’s, many of them retweeting to their followers about the condition. We had already achieved one goal so far – awareness raising! 
     
    A passion for children’s needs
    Sue is passionate about children’s health and welfare and wanted to provide healthy recipes for children and babies. She approached her friend and former colleague June O’Sullivan MBE (CEO of London Early Years Foundation), who is also a member of the Children’s Food Trust, as well as Ashford and St Peter’s Hospital dieticians who she had personal contacts with, to contribute ideas for healthy, easy to prepare, inexpensive recipe ideas. LEYF also provided many photos of children growing, cooking and eating food. Sue didn’t want the book to be “worthy”. She wanted it to be quirky and fun and found lots of funny quotes to include.
     
    By about June 2016 Sue had collated and tested more than enough recipes and had spent considerable time formatting her growing collection to develop the book. She then set about the arduous task of looking for a publisher – to no avail. She planned to self-publish, but the cost was prohibitive. 
     
    Personal setbacks
    Then on 31 August 2016, Sue was told by the doctors that she had developed myelodysplasia, a form of leukaemia. Just hours later she and her husband, Alan, watched a tragic accident unfold in the river in front of her house. A teenage boy got into difficulty trying to swim across the river and drowned. Alan had sonar on his boat and assisted Surrey Fire and Rescue Service to locate the boy’s body. It came to light that Surrey Fire and Rescue Service didn’t have sonar equipment and if Alan hadn’t helped, it may have taken days to locate the body. Sue surged into action again and crowd-funded enough money to equip four Surrey Fire and Rescue Service boats, not just with sonar, but also rescue equipment. 
     
    Sue successfully pushed to get the law changed to better co-ordinate river emergencies in the hope that in future the emphasis would be on rescue rather than the recovery of bodies. 
     
    In January this year, having felt increasingly unwell for a few months, she had a series of blood tests and a bone marrow biopsy which showed that Sue’s myelodysplasia had transformed into Acute Myeloid Leukaemia. Leukaemia caused by chemotherapy (in Sue’s case the treatment she received for her breast cancer) is incurable and terminal, with a projected life expectancy of around 6 months. 
     
    Friends rally round
    Knowing the book was almost at a stage to self-publish, Noel Hawks and I thought it would be a fitting legacy to Sue if we could in any way help her to get it published. When Sue’s neighbour Edwin Genet learnt about the publishing costs, he swept to the rescue! Edwin ever so generously wrote a cheque to cover the up-front costs for Sue to self-publish the book.
     
    I travelled over from Ireland at Easter 2017 to see Sue. Noel, Anna, Sue, Alan, another friend with Addison’s (also called Sue) and I spent a lovely afternoon on Alan’s boat. We didn’t dare stop anywhere, as Sue’s neutrophils were dangerously low and anyone in a crowd with an infection could be potentially lethal to her. After the poignant but idyllic boat trip, we further discussed the book layout. Noel had the brainwave that the book should be ring-bound like the A to Z. We discussed the possibility of a launch, but by that time Sue was too weak to travel to central London. We hoped it would be ready for the ADSHG’s 2017 AGM on 24 June. 
     
    The week before the AGM, the book was back from the publishers. Sue was nominated to receive a lifelong achievement award at an Early Years conference for her work in early years but was too ill to attend the awards ceremony in London. At least the cookery book was ready for sale!
     
    Uncertainty
    Sue was blue-lighted to hospital three days after the Early years conference with neutropoenic sepsis. I feared the worst. I thought she had just held on and survived long enough to see her book published. However, after 8 days in isolation with IV antibiotics she was discharged from hospital, having rallied around. Although terminally ill, she remains in good spirits and is as well as can be expected.

    We were diagnosed with Addison’s on the same day back in 2011. Sue is my soulmate, my rock, my inspiration and the best thing to come from me having Addison’s disease. I am beyond proud to call her my friend. 
     
    Rachel Bracken 
     
    PS from Noel
    Compared to Sue’s incredible efforts in getting this wonderful recipe book together, ably assisted by Rachel, my input was minimal. However, having done all the really hard work, Sue was unsure how to get the book printed and published and had been scared off by the terms, conditions and exorbitant prices demanded by so called ‘vanity’ publishers. That is companies who print books that aspiring authors are unable to get published but want copies to give to their friends and family, known as vanity projects. Sue’s book is more important than that and deserved better treatment. 
     
    I have worked closely with a local firm, Catford Print, on a number of music industry book projects over the past few years and they took over the printing and publishing in their customary friendly and efficient fashion. They are also reasonably priced! My wife, Anna, thought it was hilarious that I was helping with a recipe book as I struggle to co-ordinate tea and two slices of toast at the same time. Sue sent me the manuscript and I proof read it. I thought I was careful but Sue went through afterwards and was so painstaking that my approach looked slapdash. 
     
    I was delighted to be able to help in a small way and the finished product looks amazing. I was more than proud to work with Sue and Rachel on the book which stands as a testament to Sue’s indomitable spirit and the value of true friendship. 
     
    Noel Hawks
     
    Sue’s cookery book is available to order through the ADSHG web shop and in the 2017 print Christmas catalogue. 
     
     
    During her period of service as a volunteer and then an elected trustee, Sue Chambers also played a major role in bringing the ADSHG’s employers’ leaflet to completion. She contributed to improving ambulance awareness through her correspondence with the South East Coast Ambulance service, as reported in back newsletters. Her 3-year term as a trustee formally ended at the June 2017 AGM. Sue’s drive and commitment during the years since her Addison’s diagnosis in 2011 will remain a lasting and inspiring legacy for others.
     
    This article was first published in the September 2017 edition of the ADSHG newsletter.

    ADSHG

    The group's highly regarded publications for people with Addison's are undergoing a redesign over the coming months, improving their visual design and also accessibility for people with visual impairments. 

    After an extensive review and consultation the editorial team is revising the format and design of the group's publications. The overall aim has been to further improve the visual design and layout of the publications to improve the accessibility of the publications for people with visual impairments and enhance the home printing experience.
     
    The group's policy of making the publications freely available as website downloads and selling high-quality print versions in the online shop remains the same. 
     
    Key improvements
    Moving forward publications will predominately be produced as A5 rather than A4 in size As publications are revised they will be produced in both web and print formats  Both web and print publications will conform to the group's visual design and colour palette Revised publications will display a clear reviewed by/published date and for web publications it will also form part of the filename. This will ensure that you can easily confirm whether you have the most up-to-date version  
    Print publications
    Purchased from the online shop within relevant packs, the first revised pack being the ADSHG Hospital Folder (Item 300) The ADSHG Information pack, sent to newly joining postal members, is currently undergoing revision
     
    Web publications
    Freely available as website downloads from the publications centre the updated ADSHG Hospital folder publications are now available. Printable as A5 booklet or 'upscaled' by printing as A4, which will results in larger, easier to read text   Specially designed in terms of appropriate colour and contrast to assist those with visually impairments Conservative with your printer ink for home printing compared with previous versions Reviewed by/published date forms part of the filename, e.g. ADSHG-surgical-guidelines-A5W-.07-2017.pdf
     
    The ADSHG would like to thank our graphic designer Dave Thorp from the-workshop, for his hard work and dedication in producing all the group's publications since 2003 and who was pivotal in formulating and implementing these important improvements.

    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

    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.

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. 1106791.

Get in touch

    Our Online Volunteers

  • kgwhite
    kgwhite
  • pippa sharman
    pippa sharman
  • vsadler
    vsadler
  • annelben
    annelben
  • frances1
    frances1
  • webmaster
    webmaster
  • suep1954
    suep1954
  • a5037847
    a5037847

A dedicated team of volunteers contribute to and support the website, forum, shop, publications centre, video hub plus social media engagement on behalf of the charity.

×