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Found 55 results

  1. Version 1.0.0

    604 downloads

    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

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  2. Version

    513 downloads

    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

    Free

  3. Version

    700 downloads

    Addison's Disease Self-Help Group newsletter, issue 132, June 2018 Welcome to the summer 2018 edition of the ADSHG newsletter. This issue has a special travel and holidays feature with lots of helpful tips and reminders for making the most of your holidays, including guidance about the EHIC. Friends and ADSHG members pay tribute to former trustee Sue Chambers, who sadly ended her struggle with leukemia at Easter. Following the introduction of the GDPR in May, learn how we are protecting your data and how you can check and update your accounts details online. Additionally, we report on Addison's Ireland, fundraising events, social meetings and ambulance awareness. Page 1: High days & holidays New British 10mg hydrocortisone supplier Run for Addison's in the Great South Run 2018 Page 2: From the President AGM and medical lecture Page 3: Recent news A tribute to Sue Chambers Page 4: Brexit briefing Enjoy the EHIC while it lasts EMA reassigns all UK contracts Pages 5-7: Travel and holidays Tips & reminders for making the most of the holidays Lanzarote swings and roundabouts An unexpected sting in Corfu Seeing the world with Addison’s Pages 8-9: Ambulance awareness Speaking from the heart - a talk with Liverpool student paramedics Bristol student paramedic conference Julie’s ambulance awareness update Page 10: Ireland update Working with the Addison's Ireland clinical panel Help wanted at the autumn meeting Still time to add your voice Pages 11-13: Around the group About the money Complete your ADSHG member survey Lumpy Lane - a recipe from Sue Chambers Wibbly wobbly webby - protecting your data & privacy under GDPR How to check your ADSHG account details online Pages 13-14: Fundraising roundup Garstang Gallop Fundraising Fridays on social media Rare Diseases Day in-store fundraiser Twin bake sale Phoenix dinner dance Pages 14-15: Social corner A piece of cake - thoughts on getting involved with social meetings Social news and reports Social and medical meetings 2018 Page 16: The back page Reminders 2018 subscription rates Help needed for Endocrine conferences 2018 ADSHG trustees and officers

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  4. Version 1.0.0

    678 downloads

    Addison's Disease Self-Help Group newsletter, issue 131, March 2018 Welcome to the spring 2018 edition of the ADSHG newsletter. This issue contains exciting drug news on a new hydrocortisone formulation for children and a comprehensive Brexit update. Whether you are looking to get fit or already participating in a sport, Dr Rob Andrews offers lots of instructive advice about staying on top of an exercise programme with Addison's, while Jane Hodgkin reveals how words and phrases we use influence our moods and outlook. Recent medical research news, an ambulance update, fundraising stories, a website browsing guide and news on upcoming meetings complete this informative spring edition. Page 1: Spring is in the air Complete the ADSHG member survey! Great South Run 2018 Page 2: From the President About the money Interested in becoming a trustee? Page 3: Recent drug news Diurnal’s Alkindi gets the go-ahead Emergency supply from community pharmacies Page 4: Brexit briefing Prepare for the worst: hope for the best Page 5: Adrenal medicines Adrenal medicines in the UK and Ireland European Medicines Agency prepares to leave Page 6: Recent medical research Infectious causes of Addison’s Swedish patients with Autoimmune Addison’s are not overweight Page 7: Life skills Words for feeling better or worse Register with your ambulance trust Page 8: Ambulance update Turbulence on the ambulance scene A Christmas shopping surprise Page 9-11: Exercise and Addison's Bangkok Bulletin of teeth brushing and 750km Rare Diseases Day Tweet chat Powered by Krispy Kremes Staying on top of an exercise programme with Addison’s Page 12: Around the group Wibbly wobbly webby Page 12-13: Fundraising A guide for new hosts holding an Addison’s social meeting Fundraising stories Tuna bake recipe Page 14-15: Social update Meeting reports School charity events 2018 social and medical meetings Page 16: The back page Reminders 2018 subscription rates Endocrine conferences 2018

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  5. Version 1.0.0

    631 downloads

    Addison's Disease Self Help Group newsletter, issue 130, December 2017 Welcome to the winter 2017 edition of the ADSHG newsletter. This issue is bursting at the seams with news - essential drug updates, work on ambulance awareness and conference reports from members, as well as members' personal stories, fundraising updates and meeting dates. We wish all our members a very Happy Christmas and a healthy New Year! Page 1: Happy New Year 2018, everyone! 2018 subscription rise Online adrenal questionnaire now live Page 2: From the President About the money Page 3-4: Recent news New ambulance guidelines on adrenal crisis Julie's ambo update: moving the goalposts? Page 5-6: Drug news New shortage of liquid injectable hydrocortisone Chronocort update: cortisol replacement Page 7-9: Awareness update Exeter workshop on hormone dynamics CMA decision on unfair drug pricing ADSHG at the medical conferences ADSHG nursing prize awarded to ADSHG trustee! Page 10: Around the group ADSHG submission to Health Committee on Brexit - medicines Wibbly wobbly webby Page 10-12: Personal stories Living with a cortisol alert dog 66 years with Addison's Romance is not just for the young Page 13: Fundraising update Cookery book launch Runners' personal bests! Page 14-15: Social update Gill's goodbye column Meeting reports 2018 social and medical meetings 2018 fundraising events Page 16: The back page Reminders Conference dates 2018 subscription rates ADSHG trustees and officers

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  6. Version

    642 downloads

    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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  7. Version

    619 downloads

    Addison's Disease Self Help Group newsletter, issue 128, June 2017 Welcome to the summer 2017 edition of the ADSHG newsletter. This issue reports promising developments towards the new Zeneo autoinject device. We have more positive news on A&E awareness in Ireland and a report from Dr Anna Mitchell on her ongoing genetic analyses. In addition, we focus on the website updates to Living well and the launch of our injection videos on YouTube. In this issue Page 1: Planning your summer get-away? AGM and medical lecture tickets Page 2: From the President About the money Page 3–4: Recent drug news Latest news on the Zeneo needle-free auto-injection device Infacort update Brexit and the dispute over the European Medicines Agency relocation Page 5–6: ADSHG news Addison’s Ireland progresses A&E awareness Society for Endocrinology conference Grant for uncovering more about the genetic susceptibility of autoimmune Addison’s Updated surgical guidelines Page 7: Ambulance scene Have you seen the ambulance Forum makeover? North West ambulance to the rescue Registering with your local ambulance trust Page 8: Website news Spotlight on updates to Living well, Ambulance and A&E forums and YouTube injection video launch Page 9–10 Help with applying to university and support available through the Disability Living Allowance Page 11–12: Personal stories Ibiza eye-opener Injection video saves the day in Zurich Food poisoning risk from broken salad leaves Page 13: Fundraising update Pub quiz night Donations report Page 14–15: Social update Gill’s social corner 2017 social and medical meeting Page 16: The back page Reminders 2017 subscriptions ADSHG trustees and officers

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  8. Version

    630 downloads

    Addison's Disease Self Help Group newsletter, issue 127, March 2017 Welcome to the March 2017 edition of the ADSHG newsletter. This issue has exciting news about drug developments on the horizon for this year as well as discussing the potential impacts of Brexit on patients. Additionally, we look at our Group's ongoing efforts to build positive diaglogue with medics in the UK and Ireland and focus on our new website updates. In this issue: Page 1: Get running AGM medical lectures and tickets Page 2: From the President About the money Pages 3-4: Recent drug news New needle-free injection device in the pipeline Infacort update Brexit and European Medicines Agency Future access to orphan drugs Pages 5-6: Ambulance scene Ambulance regulator invites our input Nursing and medical staff shortages set to increase What's new on the ambulance scene? Pages 6-7: Recent news New website tasting menu and new Living Well dishes to try British Society for Paediatric Endocrinology annual conference Pages 8-10: Features Coping with ... your GP practice Famous lives: Saint Elizabeth of the Trinity Pages 11-12: Personal stories Office first aid: ADSHG videos to the resuce Bootneck recovery Windermere cold plunge Page 13: Fundraising update Pages 14-15: Social update Gill's social corner 2017 social and medical meetings Page 16: The back page Reminders 2017 subscriptions

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  9. Version

    601 downloads

    Addison's Disease Self Help Group newsletter, issue 126, December 2016 Welcome to the December 2016 edition of the ADSHG newsletter. This issue has positive news about drug developments on the horizon for 2017 as well as a report of our attendance at the recent Society for Endocrinology conference. Additionally, we feature several personal stories about the highs and lows of steroid-dependence. In this issue: Page 1: Good news for the new year It's subscription time Page 2: From the President About the money Pages 3-5: Recent drug news Infacort low dose hydrocortisone gets closer to launch Uncertainty over future access to EMA-licensed new drugs ADSHG represented at the the Scottish Medicines Consortium hearing on Plenadren Pages 6-7: UK news ADSHG at the endocrine conference ADSHG autumn medical seminar: Shoreham-by-Sea Page 8: ADSHG news Welcome to our new ambulance awareness coordinator Wibbly, wobbly, webby Pages 8-11: Personal stories Marty Clarke, Gaelic dream team football player My lactose-free hydrocortisone journey Conquering the London marathon Pages 12-13: Fundraising update Pages 14-15: Social corner Gill's social corner 2016/17 social and medical meetings Page 16: The back page Reminders 2017 subscriptions

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  10. Version

    610 downloads

    Addison's Disease Self Help Group newsletter, issue 125, September 2016 Welcome to the September 2016 edition of the ADSHG newsletter. After what has been an eventful few months for the country, this issue is packed full with news from our members and supporters on initiatives to support better care for people with Addison’s. This issue of the newsletter also contained a Christmas shop order form insert, highlighting items available to purchase from our online shop. In this issue: Page 1: Our community of supporters With this issue Chinese emergency treatment translations Page 2: From the President About the money Page 3: Recent drug news Campaign to add steroids for Addison's to Critical Medicines List ADSHG submission to the Scottish Medicines Consortium on Plenadren Page 4: UK news Brexit - what are the implications? Page 5: Life skills Coping with ... telling family and friends Prevention is better than cure - get a flu vaccination this winter ADSHG Twitter Chat raises awareness Register your Addison's with your local ambulance trust Page 6: Research news Uncovering the purpose of the CYP21A1P pseudogene Pages 7-9: ADSHG AGM and annual report A social and informative day out Treasurer's report Publications and media team report Page 10: Personal stories Kate Granger - #hellomynameis Page 11: Personal experience On the move with Addison's Pages 12-13: Fundraising update Pages 14-15: Social corner Gill's social corner 2016 social and medical meetings Page 16: The back page Reminders 2016 subscription rate

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  11. Version

    715 downloads

    Addison's Disease Self Help Group newsletter, issue 124, June 2016 Welcome to the June 2016 edition of the ADSHG newsletter. This issue is packed full of news about some surprising recent drug developments, some positive ambulance news, the forthcoming relaunch of our main website, recent marathon triumphs of our fundraising runners, and some riveting personal travel stories. In this issue: Page 1: Making the most of the summer holidays New in the ADSHG shop In this issue Page 2: From the President About the money Emergency injection videos Page 3: Medications update Lactose-free hydrocortisone Fludrocortisone out of the fridge! New round hydrocortisone New pack design, same product 2.5mg hydrocortisone pellets: not so strong Pages 4-5: The new look ADSHG website arrives Page 6: Ambulance news Calling 999: hints and tips Page 7: Conference news ADSHG at medical conferences Pages 8-9: Travel with Addison's Holiday season You can never be too sure Rare Disease Day: raising awareness of Addison's Pages 10-12: Personal experience A sky-high crisis The doctor's view... Fulfilling a dream: running the London marathon Pages 12-13: Fundraising Pages 14-15: Social corner Gill's social corner 2016 social and medical meetings Page 16: The back page Reminders 2016 subscription rate

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  12. Version

    818 downloads

    Addison's Disease Self Help Group newsletter, issue 123, March 2016 Welcome to the spring 2016 issue of the ADSHG newsletter. This issue is packed with riveting personal stories, all with a happy ending. In this issue: Page 1: Springing into spring Video launch Marathon mission Page 2: From the President About the money Meet the new clinical panel Pages 3–4: Recent drug news Fludrocortisone scare Hydrocortisone concerns Hydrocortisone 2.5mg pellets: are they an alternative? Pages 4–5: Ambulance news Ambulance protocols: Irish success story East of England ambulance protocols Pages 6–9: Personal experience ADSHG videos help prepare for emergency injection Our first emergency injection experience Diagnosis slow: sodium low The doctor's viewpoint Pages 9–10: Around the group Hydrocortisone and levothyroxine: double trouble or harmonious duet? Pages 10–13: Fitness focus Land's End to John O'Groats: the long way back to the top Capital Marathon Challenge Running to success Pages 13–14: Fundraising Pages 14–15: Social corner Gill's social corner 2016 social and medical meetings Page 16: Back page Reminders 2016 subscription rate

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  13. Version

    497 downloads

    Addison's Disease Self Help Group Newsletter, issue 122, December 2015 ​Welcome to the winter 2015 issue of the ADSHG newsletter. This issue celebrates the achievements of our members and their families in 2015, during which they have climbed mountains, swum the ocean and run races on our behalf. In this issue: Page 1: A box of celebrations at Christmas ADSHG schools leaflet now online Direct Debit: with this issue Page 2: From the President About the money Pages 3-5: Mont Blanc special Climbing Mont Blanc - with Addison's and Bessie Bear High altitude climbing with Addison's - the practicalities Pages 6-7: Conference report ADSHG at the Edinburgh Endocrine Conference 2015 Feedback from volunteers on our stand ADSHG posters Pages 8-9: Around the group Edinburgh seminar: observations from the floor Register with your ambulance trust Remember your flu vaccine Send a card this Christmas Wibbly, Wobbly, Webby Pulses study update Pages 10-12: Personal experience Bangkok life: nothing like an early start European odyssey Have a very restful Christmas Donations report Pages 12-15: Social corner Margaret's social corner Addison's Ireland meeting: Limerick Hospital meeting a huge success Social and medical meetings Page 16: Back page Reminders 2016 subscription rates This issue of the newsletter also contained a special fundraising insert highlighting our members' and supporters' fundraising achievements throughout 2015.

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  14. Version

    119 downloads

    Addison's Disease Self Help Group newsletter, issue 120, June 2015 Welcome to the summer 2015 newsletter. This issue takes an optimistic punt on the British weather – or our members’ overseas travel plans – and is packed full with hot weather and travel advice. You can find out how expert traveller Nathan Gafuik, the Canadian gymnast with Addison’s, handles long haul flights when he travels to international competitions, on page 5. And you can discover how ADSHG trustee Andrew is adapting to life in colourful, crowded, humid Bangkok. Ex-pat ADSHG member Yvonne explains how she survives in the searing Australian summers. Page 1: Front page Will this be the barbecue summer? Direct debit paper mandates Thai and Arabic emergency treatment translations Page 2: From the President About the money Page 3: ADSHG video appeal Self-stabbing for beginners: a how-to guide Further Efcortesol delay Pages 4-7: Travel with Addison's Handling the heat at home and abroad Nathan Gafuik: travelling the world Bangkok life Ten tip on how to manage your Addison's while on the road in Thailand Thailand travel tips: the doctor's view Holiday reminders Pages 8-9: Nursing awareness Addison's on the Northumbria curriculum Pages 10-11: Around the group Have you fallen off the list? Ambulance registration in the south west Genetic research: give blood Never Events framework 2015 The true cost of prescriptions Is your Medic Exempt still valid? Page 12: Personal experience Our first emergency injection Page 13: Fundraising reports Ian's £undraising bit Wibbly Wobbly Webby Pages 14-15: Social reports Jan's social corner 2015 social & medical meetings Page 16: Back page Reminders 2015 subscription rates

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  15. Version

    56 downloads

    Addison's Disease Self Help group newsletter, issue 118, December 2014 Welcome to the winter 2014 newsletter. There is good news and bad news in this issue. The bad news is about the shortage of injectable liquid hydrocortisone – Efcortesol – as you can read on page 3. The rest of the newsletter is more positive, beginning with a diary exclusive from Nathan Gafuik, the 29-year old with Addison’s who led the Canadian gymnastics team at the Glasgow Commonwealth Games this summer. Page 1: Front page ...and a healthy new year Subscription rises 2015 Page 2: From the President About the money Page 3: Recent drug news Efcortesol shortage Pages 4-5: Personal experience Glasgow Commonwealth Games: Nathan Gafuik diary exclusive Pages 6-9: 2014 AGM Chair's welcome Observations from the floor Treasurer's report Facebook report Member's feedback Pages 10-11: Around the group NHS hospital safety consultation Volunteers needed: endocrine conferences 2015 Nursing awareness: your help needed CAH is Us hosts London seminar Page 12: More drug news Prednisolone pricing controversy continues Pages 13-15: Social reports Jan's social corner 2015 social meetings Page 16: Back page Reminders Subscription rates

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  16. Version

    60 downloads

    Addison's Disease Self Help Group newsletter, issue 117, September 2014 Welcome to the autumn 2015 newsletter. The AGM and medical lecture on 1 November will be our ADSHG “party” to celebrate 30 successful years as a support group for people with Addison’s and their families. This November also marks the 10th anniversary of our accreditation, as a charity formally registered with the Charity Commission. We will be celebrating that important milestone, too. There will be cake and balloons to go with the sandwich lunch at 1pm, which will be followed at 2pm by the 12th annual general meeting and 13th medical lecture of the ADSHG. Page 1: Front page Come to the party on 1 November With this issue Tell your friends: Great South Run 2014 Page 2: From the President About the money Pages 3-4: Recent drug news Spotlight on Diurnal Prednisolone pricing controversy Page 5: Medical news Making hospital visits safer Page 6: Life skills Coping with fear of hospitals Page 7: Personal experience Bad bugs strike again Pages 8-9: Around the group Red flags for the ambo What's new with flu Care.data concerns: update Nursing awareness: Staffordshire replies Pages 10-11: Meeting reports EU nurses conference: Wroclaw Spain: a dream come true Page 12: Personal experience Google gives the diagnosis Pages 12-13: Fundraising reports Ian's £undraising bit Pages 13-15: Social reports Jan's social corner 2014 social meetings Page 16: Back page Subscriptions Reminders

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  17. Version

    53 downloads

    Addison's Disease Self Help Group newsletter, issue 116, June 2014 Welcome to the summer 2014 newsletter. This autumn marks our 30th anniversary, and we will be duly celebrating with cake and balloons at the 1 November AGM and medical lecture. The ADSHG wears its history with pride, and can boast an impressive growth from humble beginnings, as you can read in the President’s column on page 2. We will be toasting Deana, our founder and President – and the future success of her little group – on 1 November at the AGM. Page 1: Front page Celebrating the big 3-0 Help shape the next 30 years: give us your views Page 2: From the President About the money Page 3: Recent drug news New generic 100mg hydrocortisone Promising developments with Chronocort Pages 4-5: Recent news Medical jewellery: there is an alternative Pages 6-7: Around the group Nursing awareness: good news from Wales Ambulance update Pages 8-9: Conference news Endocrine conference Liverpool 2014 Steroid education: key to success Pages 10-12: Personal experience Stabbing the President Kuwait calling: on the drip Letter to my grandson Page 13: Fundraising news Ian's £undraising update Pages 13-15: Social reports Jan's social corner 2014 social meetings Page 16: Back page Subscriptions Reminders

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  18. Version

    69 downloads

    Addison's Disease Self Help Group newsletter, issue 115, March 2014 Welcome to the spring 2014 newsletter. The ADSHG turns 30 in autumn this year, marking the auspicious season when Deana Kenward, our President, began contacting everyone who had responded to her little “ad” in the Radio Times. This autumn it will also be 10 years since the ADSHG’s application was approved by the Charity Commission and we became a registered charity. We have come a long way in those three decades and have a lot to celebrate. Page 1: Front page Happy birthday to us! VanishPoint syringe on sale now Page 2: From the President About the money Pages 3-6: Recent news Emergencies r us: more from our 2013 survey Stabbing practice at work Pages 7-8: Life skills A perspective on anxiety Page 9: Medical research Pulses - the rhythm of life? Pages 10-11: Personal experience Taking on the world: triathlon training for beginners The healthiest sick guy you know Page 12: Exercise and Addison's The doctor's view Page 13: Fundraising reports Ian's £undraising update Pages 14-15: Social reports Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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  19. Version

    32 downloads

    Addison's Disease Self Help Group newsletter, issue 114, December 2013 Welcome to the winter 2013 newsletter. This issue explores the ways that people with Addison’s around the world have chosen to celebrate life post-diagnosis. Rachel in Eire, Andrew in Spain, an Ian and Sarah in the UK, and Geoff in Australia, describe some of the ways they have marked their diagnosis and recovery, many through sporting or recreational achievements. Jane explains in her page 7 column on coping with stress how she, too, determined to see the positives in her diagnosis and put it to good use in her life. Page 1: Front page Welcome to the winter newsletter New year = renew subscription time Employers leaflet Page 2: From the President About the money Pages 3-4: Recent news Ambulance awareness: advances in Ireland New medical paper on good clinical practice Pages 5-6: Medical awareness Nursing awareness raising Hospital awareness: Arran's first crisis Page 7: Life skills Reducing the stress of a long term condition Pages 8-10: Personal experience The Great Fjord & Shannon swims Santiago pilgrim trail St Crispin's day nightride in verse Page 11: Famous lives Geoff Starling - from exhilaration to despair and back again Page 12: Around the group Leicester medical seminar Page 13: Fundraising report Ian's £undraising update Pages 14-15: Social report Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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  20. Version

    59 downloads

    Addison's Disease Self Help Group newsletter, issue 113, September 2013 Welcome to the autumn 2013 newsletter. This issue features some of the early findings from our online emergency questionnaire. As you will see, we are aiming to share the survey findings with health practitioners and policy makers, in a constructive dialogue to help our members manage their steroid-dependence as well as possible. Page 1: Front page Emergencies "r" us Christmas order form Online emergency survey Page 2: From the President About the money Pages 3-4: Recent news All about us: emergency survey findings Pages 5-7: Medical awareness raising Running out of steroid medication: the doctor's view Ambulance awareness update Recent drug news: Chronocort Letter writing for nursing awareness Page 8: Life skills Coping with the trauma of crisis Pages 8-9: Personal experience My hospital crisis My hospital crisis: the doctor's view Page 10: Famous lives Sabino Arano Pages 11-12: Personal experience My gap year goes astray Page 13: Fundraising report Ian's £undraising report Pages 14-15: Social report Jan's social corner Future social meetings Page 16: Back page Reminders Subscriptions

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  21. Version

    79 downloads

    Addison's Disease Self Help Group newsletter, issue 112, June 2013 The most important message in this issue is here on the front page: we want everyone to participate in our emergency survey! In a new venture for the group, the questionnaire is a web-based format, using software provided by SurveyMonkey. This has the advantages of being much cheaper than a printed questionnaire, and means we get instant updates on the running totals as more people log in to take part. Page 1: Front page Listening to our members: emergency survey Online emergency survey Page 2: From the President About the money Pages 3-4: Recent news About the emergency survey Ambulance registration: why it's important News from Dublin Problems with NHS emergency care: is it a crisis? London ambulance invites us in Pages 5-6: Medical awareness raising ADSHG at the Harrogate endocrine conference Letter writing for nursing awareness Pages 7-9: 2013 AGM Chair's remarks Treasurer's report Webmaster's report Members' feedback Page 9: Home and away Specialist endocrine care: BMJ publishes our views Pages 10-12: Personal experience Jack's comeback Ambulance registration: a good news story Page 13: Fundraising report Ian's £undraising update Travelling light Pages 14-15: Social reports Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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  22. Version

    18 downloads

    Addison's Disease Self Help Group, issue 111, March 2013 Welcome to the spring 2013 newsletter. Our members’ Middle East travel and trekking experiences feature large in this issue. Jo Grey writes about her rugged adventure in the Sahara, when she braved 40º heat, sandstorms, flies and the dreaded ‘Sahara tummy’, to trek 120km across the desert last October. Not for the faint-hearted, you can read the nitty-gritty of her epic stroll on pages 10 - 12. Andrew found himself making less progress on the journey home, when his flight to Kuwait became fog-bound and was stranded at the world’s largest airport – Dammam in Saudi Arabia – as he describes on pages 12 – 13. Page 1: Front page The journey home Notes for nurses: hospital advice Page 2: From the President About the money Pages 3-4: Recent news Addison's life stories published Pages 4-5: Recent drug news Hydrocortisone price stays high Efcortesol availability Pharmacy labels Page 6: ADSHG at work Nursing awareness letters Ian's £undraising bit Pages 7-9: Medical lecture ADSHG medical lecture 2012 Pages 10-13: Personal experience Maniacs in the Sahara Kuwait calling: sleepless in Dammam Pages 14-15: Social reports Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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  23. Version

    43 downloads

    Addison's Disease Self Help Group newsletter, issue 110, December 2012 Welcome to the winter issue of the Addison’s newsletter. 2012 was a busy, active year for the group, with plenty happening that we can look back on with satisfaction. On page 2 our President, Deana Kenward, describes her memorable day at Windsor Castle in November, when she was awarded an MBE for her 28 years of dedicated service to the ADSHG. As you will see in the photos, Deana (who ordinarily never smiles for the camera), couldn’t stop smiling all day. Well done, Deana, and richly deserved! Extra download file included: BMJ - How to avoid precipitating an acute adrenal crisis Page 1: Front page We wish you a merry Christmas Addison crisis: the latest advice Page 2: From the President MBE award: my big day out Pages 3-5: Recent drug news Rescue of Addison’s disease study Modified release Plenadren: the latest Pages 5-6: ADSHG at work ADSHG at endocrine conferences Nursing awareness letters Pages 7-10: 2011 annual report 2011 report and accounts Pages 10-16: Personal experience Diamonds are forever: 60 years with Addison’s Not such a merry Christmas The doctor’s view Travelling light Page 17: Fundraising report Ian’s fundraising update Pages 18-19: Social reports Jan's social corner Regional meetings Page 20: Back page Reminders Subscriptions

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  24. Version

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    Addison's Disease Self Help Group, issue 109, September 2012 Welcome to the autumn 2012 newsletter. This issue features an inspiring interview with the Canadian Olympic gymnast Nathan Gafuik, who represented Canada in the recent London Olympic Games. Now aged 27, Nathan was diagnosed with Addison’s some 12 years ago, aged 15. During the Olympic Games, he met our journalist member Jane, to talk to her about how he manages the combined challenges of his Addison’s and high level gymnastic competitions. You can read about Nathan’s remarkable courage and self-discipline on page 3. Page 1: Front page Our Addison's heroes With this issue: Christmas order form Page 2: From the President About the money Pages 3-4: Personal experience Olympic gymnast with Addison's Pages 5-6: Recent news What's new with flu? Nursing awareness raising Members' perspective Pages 7-8: AGM reports Remarks from the Chair Treasurer's report President's address Pages 9-10: Personal experience Kuwait calling: from New York The nurse's view Page 11: Recent drug news Fludrocortisone storage instructions Page 12: Home and away Travelling light Page 13: Fundraising update Ian's fundraising bit Pages 14-15: Social reports Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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  25. Version

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    Addison's Disease Self Help Group newsletter, issue 108, June 2012 Welcome to the summer 2012 newsletter.This issue features articles from two doctors, on some important aspects of our medication management. Dr Kristian Lovas of Bergen Medical School Norway, explains the implications of his research team’s recent fi ndings about how grapefruit juice and liquorice alter the influence of our hydrocortisone tablets on page 3. Then on page 11, Dr Rob Andrews of Bristol Medical School responds to the dilemmas posed by Andrew in Kuwait calling, where he describes the combined challenges of extreme heat and stress. Page 1: Front page Good stress, bad stress With this issue Page 2: From the President About the money Pages 3-4: Recent drug and research news What is it about grapefruit juice and liquorice? Once a day Plenadren: the latest news Letter writing for nursing awarenss Pages 5-9: Medical meetings British Endocrine Societies conference report Pages 10-12: Personal experience Kuwait calling: heat+stress+ Travelling light Nearly new baby Page 13: Fundraising update Ian's fundraising bit Pages 14-15: Social reports Jan's social corner Regional meetings Page 16: Back page Reminders Subscriptions

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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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