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  2. Dudley charity gala for Addison's

    kgwhite posted a calendar event in Fundraising

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    The Village Hotel, Dudley. Disco starts at 7pm Buffet included Fun photo booth Special charity tombola Tickets £18 per person including disco and buffet Please contact caroline Rose on 07719 624 271
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    ADSHG submission Oct 2017 to the Health Committee enquiry on Brexit - medicines. This submission explores the implementation risks of a transition to new customs arrangements as Britain leaves the European Union and offers some suggestions for contingency planning around management of possible supply chain bottlenecks for both raw materials and basic generic drugs.

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  23. Linda Runs London Landmarks Half Marathon

    jenniferrooney5 posted a calendar event in Fundraising

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    Linda Rooney is travelling down to London from Glasgow to run the London Landmarks half marathon. Both Linda and her daughter Jennifer, who has Addisons and is also a runner, were both incredibly lucky to get places as the race sold out in 5 minutes. Linda's fundraising page is here: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=LindaRooney18
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  27. Prof Will Drake from the Addison's Clinical Advisory Panel will be giving a guest lecture at the Ass. British Clinical Diabetologists autumn meeting in London. His topic will be: Update on adrenal disease and current studies. Open to ABCD members and taking place at BMA House, details here.

  28. Kelly Does The Great South Run 2017

    ADSHG posted a calendar event in Fundraising

    Kelly Doe us running the Great South Run 2017! Kelly was diagnosed with Addisons 2 years ago and this is her first long distance run. We wish her luck!

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    The new medical summary form is an easy way to record the medications you are currently taking as an aide-mémoire and as a guide for medical professionals, when my medical records are unavailable and your medications need to be known. The leaflet is © ADSHG March 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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  31. 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.
  32. The Health Committee (the Westminster select committee chaired by backbench MP Sarah Wollaston, a retired GP) has opened an enquiry into the impacts of Brexit on access to medicines, medical devices and substances of human origin. This enquiry is open to submissions from the public until end of day, Thursday 26 October. Anyone is able to send in a personal submission. People with long-term medical dependencies such as levothyroxine replacement or steroid-dependence are potentially at risk from supply disruptions as Britain leaves the Single Market/Customs Union. Most of the generic medicines licensed in the UK are manufactured at plants outside Britain, across various countries within the European Union. The terms of reference for this enquiry can be found on this link. The committee advises that: The Health Committee is responsible for scrutinising the work of the Department of Health and its associated public bodies. Submissions should therefore address matters for which the Secretary of State for Health is responsible. However, comments are welcome on matters where the Secretary of State for Health may not have lead responsibility, but where the withdrawal negotiations have important implications for the safe and effective supply of medicines, medical devices, medical products and substances of human origin in the UK. Respondents need not provide responses to all questions. Equally, if there are any crucial issues not captured under the questions we pose, please highlight what they are and explain their salience. To send an individual submission, here is a direct link to the online form.

  33. Hammersmith Hospital W12

    kgwhite posted a calendar event in Conferences & events

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    Endocrine nurse Debbie Papadopoulos, Prof Karim Meeran and Hammersmith Hospital endocrine unit are kindly inviting ADSGHG members to join their patient satellite programme as part of the annual endocrine symposium. This event is also attended by Pituitary Foundation and AMEND members, so is an interesting opportunity to hear about other angles on steroid-dependence. Please ensure you reserve a place; no casuals on the day. Details in the members' calendar

  34. Sheffield Hospital Meeting

    kgwhite posted a calendar event in Conferences & events

    SHEFFIELD HOSPITAL MEETING TUES 24 OCT 7pm Jana Sandford and endocrine nurse Vicki Ibbotson invite you to join them on Tuesday 24 Oct at 7pm. Vicki will answer questions and will be teaching/reminding us how to use emergency hydrocortisone injection. Details in the members' calendar

  35. Nathalie runs Bournemouth

    kgwhite posted a calendar event in Fundraising

    Nathalie is running the Bournemouth half marathon! Nathalie is steroid-dependent after surgery to remove an adrenal tumour. She writes on her fundraising page: Now on to the RUNNING.... If I donated a pound for all the times people have questioned whether I should be running after my operation, ADSHG would be doing well but as I haven’t, I’m asking for your help. Yes, RUNNING is good for my health. Not only is it helping me to build up my wasted muscle fibres, it is also helping to keep me sane! RUNNING makes me feel POWERFUL and gives me the freedom that I once lost. I am so excited about the Bournemouth Half so please support me and http://www.addisons.org.uk/

  36. Carl is boxing for ADSHG

    kgwhite posted a calendar event in Fundraising

    Carl Elmer is stepping into the ring for Addison's. He won his first ever boxing match, back in April this year and is coming back for more. Well done, Carl!

  37. Tammy runs Leicester

    kgwhite posted a calendar event in Fundraising

    Tammy Haywood is taking on the Leicester marathon! Her husband Gerald, who has Addison's, will be cheering her on and handing out ADSHG leaflets to raise awareness. Tammy is a regular runner, so will be taking this in her stride. But a marathon is a marathon and we wish her luck.

  38. Sue's cookery book

    ADSHG posted a article in Fundraising experiences

    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.
  39. Autoimmune Addison’s disease (AAD) is a chronic condition where affected patients require steroid replacement for life. They are also faced with the ever-present risks of adrenal crisis and complications associated with over-replacement with corticosteroids. In the UK, the common glucocorticoid replacement regimen for AAD is hydrocortisone (15-20mg) taken in divided doses and the synthetic mineralocorticoid, 9a-fludrocortisone, taken once daily at a dose of 50-200mcg, as guided by blood pressure, electrolytes and plasma renin level. For most patients, daily steroid replacement is adequate to control symptoms but does not restore them to full health. Our group has previously established that AAD is a heterogeneous condition where some patients demonstrated various degrees of residual adrenal function. This suggests that an individualised steroid replacement regimen may be more appropriate for some AAD patients. However, an accurate objective outcome measure of clinical benefits to assess the adequacy and efficacy of steroid replacement is still lacking. Current practice relies on subjective clinical judgement to assess the adequacy of glucocorticoid replacement. A 24-hour serum cortisol profile could be performed on some patients but serial measurement of cortisol level lacks practicality for frequent monitoring purposes. Hence, robust biomarkers that could inform clinical outcome from fast and accurate read-outs will be highly desirable. In light of this, we aims to carry out a pilot study to uncover the glucocorticoid-responsive biomarkers that could be retrieved from a one-off blood sample. Advances in proteomic technology have allowed broad-based assessment of protein concentrations using only small amounts of blood. Steroid deficiency is highly likely to be reflected in the proteomic pattern in the blood. We hope to identify protein patterns that would distinguish patients who are adequately replaced with steroids from those who are not. We hope to achieve this by collaborating with the Newcastle University Protein and Proteome Analysis Unit, using advanced proteomic techniques (mass spectrometry). In the longer term, we would like to develop a simple, fast and accurate read-out to allow rapid and objective assessments of the efficacy and safety of steroid therapy, on an individual basis. This will prevent the side effects associated with over-replacement with steroids, such as osteoporosis and diabetes; as well as reducing the health burden from under-replacement with steroids. I am grateful to the ADSHG for supporting my research and I look forward to letting you know my findings in the future. Dr Earn Gan Dr Earn Gan is a NIHR academic clinical lecturer from Newcastle University who completed a PhD in 2015 under the supervision of Professor Simon Pearce. She investigated the novel therapeutic approaches and pathophysiology in autoimmune Addison’s disease (AAD). She continues to develop her research experience in the field of AAD and has had 8 publications related to AAD in various peer-reviewed journals. This article was first published in the September 2017 edition of the ADSHG newsletter.

  40. Version

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    Addison’s Disease Self Help Group newsletter, issue 129, September 2017 Welcome to the autumn 2017 edition of the ADSHG newsletter. This issue announces the arrival of the Addison’s cookery book, a enticing collection of healthy recipes compiled by Sue Chambers, with the story of how it came together. Our central feature reflects on June’s successful and enjoyable annual general meeting and medical lecture. Additionally, we report on the latest drug news, ambulance awareness and the ADSHG medical research grant, as well as the launch of the upgraded website. This issue of the newsletter also contains the 2017 Christmas catalogue order form insert (included as an extra download file here), highlighting items – including those all-important stocking fillers – available to purchase from our online shop. Page 1: Hot news from the kitchen Christmas catalogue 2017 Don’t forget your flu vaccine Page 2: From the President About the money Page 3: Sue’s cookbook Page 4: Brexit update Customs uncertainty: possible drug supply disruptions Page 5-6: ADSHG and UK news Repeat prescription length and reserve supply Winter flu vaccine reminder Medical research grant report: uncovering biomarkers for steroid-dependent patients Fludrocortisone price hike causes hardship for dog owners Natural killer cells and Addison’s Page 7: Around the group Talking to Sheffield medical students Injectable hydrocortisone in Ireland Price watch Pages 8-10: AGM report Personal impressions from a volunteer Finance report Social media report Minutes of the 2017 AGM Page 11: Ambulance awareness Ambo update: get yourself registered! East of England ambulance to the rescue Spotlight on Living Well Page 12: Personal experience Molly’s mind - blogging my way through life Page 13: Fundraising update Donations report Page 14-15: Social update Gill’s social corner 2017/8 social and medical meetings Page 16: The back page Reminders Conference dates 2018 subscription rates ADSHG trustees and officers

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    Addison’s at University: finding the balance between study, social life and staying well To mark the start of the new academic year, our upcoming Twitter Chat will focus on students with Addison’s and how to balance the demands of study and social life while managing their condition. This Tweet Chat will take place at 19:00-20:00 BST this Sunday, 24 September. But while this chat is aimed primarily at students, both new and returning, the hints and insights discussed should be useful for anyone affected by Addison’s. What is a Tweet Chat? A Tweet Chat is in essence a virtual panel discussion that take place on Twitter, using a predefined hashtag which links together the tweets into a virtual conversation. Our Tweet Chat will be hosted by the ADSHG Twitter account, @AddisonsUK, using the hashtag#AddisonsQA. We'll ask a series of questions to facilitate the conversation. Who will be there? We are delighted to have an Expert Panel representing students and academics with Addison’s and an endocrine nurse and registrar both with a research interest in adrenal medicine. The distinguished panel includes: Molly Corrigan, 3rd year student at University of Manchester @marleytron Miranda Stracey, 3rd year student at Southampton University @miranda_stracey Clare Fenwick, lecturer and researcher at Oxford Brookes University @csf0961 Katrina Grier, University of Manchester Wellbeing team @WellbeingUOM Lisa Shepherd, Endocrinology Nurse at Heart of England NHS Foundation Trust @lisashepherdcl1 Dr Anna Mitchell, Endocrine Registrar at the Royal Victoria Infirmary, Newcastle; @Anna_L_Mitchell How do I join in? 1. Join Twitter 2. Follow us on Twitter - @AddisonsUK - and the rest of the team involved in the #AddisonsQA 3. Tune in this Sunday (24 September) and interact with the #AddisonsQA community, making sure to include the hashtag #AddisonsQA in your tweets We hope many of you and your families will be able to 'tune in' on the evening, tweeting and retweeting to help raise awareness and build the #AddisonsQA online community. For those of you that aren't on Twitter or free that evening, a summary of the #AddisonsQA will be available after the event in our members' forum and reported in the December newsletter to ensure no one misses out!
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    ADDISONS IRELAND ANNUAL MEETING When : Saturday 21st October 2017 Time : 2-5pm Where : Mitchelstown, Co. Cork Details in the members' social calendar
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  47. ADSHG surgical guidelines

    templeton1 reviewed ACAP's file in Emergencies & hospitalisation

  50. QMC NOTTINGHAM HOSPITAL MEETING

    kgwhite posted a calendar event in Conferences & events

    QMC NOTTINGHAM HOSPITAL MEETING Mon 25 Sept 2pm Caroline May, the specialist endocrine nurse, invites ADSHG members and their families to join her at Gateway E at The Circle Treatment Centre, QMC on Monday 25 Sept at 2pm. You do not have to be a QMC patient to attend. Please note, this is a change of day from the usual QMC Friday events. If you would like to attend, please contact Caroline at caroline.may@circlenottingham.co.uk
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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.

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