Addison's Disease Self Help Group (ADSHG)
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addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG)
@addisonsdisease.bsky.social
260 followers 110 following 230 posts
The UK charity for all affected by Addison’s disease & adrenal insufficiency. 🗓 29 May: #AddisonsDiseaseDay 🎉#TeamAddisons 📲Learn more: #AddisonsQA
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addisonsdisease.bsky.social
Living with Addison's or adrenal insufficiency? Don't forget to add these to your December to-do list 📝

Always be prepared for an adrenal crisis by checking that you and your loved ones know how to administer your emergency injection. Watch our life-saving videos here 👉 https://loom.ly/lknivTo
Festive-themed graphic from the Addison's Disease Self-Help Group (ADSHG) with strings of colourful Christmas lights across the top and bottom. It gives four reminders to those living with Addison's or adrenal insufficiency, to remember over the festive season. Each reminder on the list has an accompanying illustration or image, alongside a checkmark. The text and checkmark for the first and third reminders are in purple, while the second and fourth are in teal. 1. Illustration of a packet of tablets: ‘Check medicines and emergency injection kits are in date.’ 2. Illustration of a prescription form: ‘Order repeat prescriptions ahead of the bank holidays.’ 3. Image of an ADSHG emergency injection kit with a hydrocortisone powder and water vial: ‘Check others know where you keep your emergency injection kit at home and when you travel.’ 4. Image of an open laptop showing the ADSHG's emergency injection YouTube videos. On the screen is someone administering an injection in their arm: ‘Watch our 'how to' hydrocortisone emergency injection YouTube videos with your family and friends.’ The circular logo for the Addison’s Disease Self-Help Group is in the bottom right corner. A red and white Santa hat sits on top of the logo at an angle.
December 2, 2025 at 10:01 AM
addisonsdisease.bsky.social
Buy a bauble. Light up our tree. Make a difference 🎄

This Christmas, help our virtual tree shine brighter with every bauble. Each one represents your support for people living with adrenal insufficiency, including Addison’s 💫

✨ Buy a bauble 🔗 https://www.justgiving.com/campaign/buyabauble25
Buy a bauble 2026
This Christmas, you can make a difference by adding a bauble to our virtual charity tree! For each donation, we’ll hang a beautiful virtual bauble on the tree, directly supporting our charity.
www.justgiving.com
December 1, 2025 at 9:01 AM
addisonsdisease.bsky.social
For November @thattillyrose.bsky.social bestselling memoir 'Be Patient' is 99p on Kindle & Audiobook!

Grab a copy to read more about her journey with Addison's, inc using our emergency hydrocortisone injection kit to save her life!
📖 👉 https://shorturl.at/s7QLI
November 29, 2025 at 10:30 AM
addisonsdisease.bsky.social
We're giving you 10% off the ADSHG shop this #BlackFriday!

🛒 Use code 'BFriday10' (Friday 28 November only)
🛍️ No minimum spend - one use per customer
⏳ Hurry! Stock is limited and many items are selling fast
👉 Shop here: www.addisonsdisease.org.uk/shop

Thank you for supporting our charity 💜
Promotional graphic for a Black Friday discount from the Addison's Disease Self-Help Group (ADSHG). A large white price tag on a teal background displays the message: ‘Black Friday – Get 10% off the ADSHG shop!' The 'Black Friday' headline is in large bold text, with the word 'Friday' in the same teal colour as the background. The rest of the text on the tag is in black. At the bottom of the price tag, the text reads 'Use code: BFriday10' with the discount code highlighted in bold. Underneath this, in smaller text, it says 'One day only: Fri 28 Nov.’ The tag hangs on a slight angle using a black string. The white circular logo for the ADSHG appears in the top-right corner. This version of the logo has the word 'Supporting' surrounding it twice.
November 28, 2025 at 9:01 AM
addisonsdisease.bsky.social
📣 Have your say on the Rare Disease Framework in England! RareCare have launched a survey to better understand the real-life experiences of people affected by rare conditions, such as Addison's and adrenal insufficiency.

Complete the survey to take part 👉 form.jotform.com/252324831142044
A promotional poster from RareCare, encouraging people in England to take part in a survey about the UK Rare Disease Framework. The poster reads: "Your Opinion Matters! Have Your Say on the Rare Disease Framework in England! If you are a person living with a rare disease, a carer, or a professional working in the rare disease space, please share your views." It explains that: "This survey is being run by RareCare (NIHR funded policy research project) to understand the real-life impact of the UK Rare Disease Framework and England’s Action Plans!" The pale blue poster includes an illustration of a pair of hands using a mobile phone. The phone is being held in one hand, while the other is used to answer questions on the screen. A QR code is at the bottom of the poster under the text: "Scan the QR code to start the survey!" In the bottom right corner is the RareCare logo.
November 27, 2025 at 9:01 AM
addisonsdisease.bsky.social
📝 Our GP leaflets are now in one updated guide, so you can support your GP in the diagnosis and management of your Addison's or adrenal insufficiency.

Order or download yours to read as the expert patient, or pass on a copy to your GP 🔗 www.addisonsdisease.org.uk/caring-for-the-addisons-patient
A hand holds up a purple and teal leaflet titled “Diagnosis and Care of a Patient with Adrenal Insufficiency, including Addison’s Disease: Guide for GPs and ACPs" on a light grey background. The cover of the guide includes the logo for the Addison's Disease Self-Help Group (ADSHG) at the top right. This version of the logo includes the text "Addison's Clinical Advisory Panel" underneath. The cover also includes a purple stethoscope icon in a white circle, labelled “Healthcare Professionals.” To the left of this, the small text reads: "A guide to inform and support GPs and Advanced Care Practitioners." At the bottom of the leaflet, is the website address for the ADSHG on a white banner: "addisonsdisease.org.uk." This small text is in teal. At the top of the leaflet, it says "Addison's Disease Self-Help Group (ADSHG)" in small text, along with the words "Registered charity 1179825" underneath. This text is white and sits on a teal banner that runs across the top of the guide at a slight angle. Next to the leaflet, there is an arrow pointing to the title of the guide with the words “Digital download available.” Both the arrow and text are in the same purple colour as the leaflet itself. In the bottom-left corner, there is the Addison's Clinical Advisory Panel version of the ADSHG logo.
November 26, 2025 at 10:01 AM
addisonsdisease.bsky.social
Back by Popular Demand! 📣

Our two most popular Christmas card designs are back - but hurry, stock is very limited! Once they’re gone, they’re gone.

🎁 Grab yours today 🔗 www.addisonsdisease.org.uk/shop
November 24, 2025 at 9:01 AM
addisonsdisease.bsky.social
This #FundraiserFriday, we’re celebrating Hannah, Claire and the wonderful Blackford Fiddle Group, who chose to support the ADSHG at their ceilidh fundraiser - raising funds in support of Hannah's dad, who has Addison's 🎻

👉 Join us in thanking them for their amazing efforts!
November 21, 2025 at 9:01 AM
addisonsdisease.bsky.social
Support the ADSHG while you shop this Black Friday! 🖤

By signing up with Give As You Live, a percentage of what you spend at your favourite stores will be donated to our charity - automatically and for FREE! 🛍️

🤝 To sign up, please visit 🔗 www.giveasyoulive.com/join/addisons
November 20, 2025 at 9:01 AM
addisonsdisease.bsky.social
For our Northern Ireland followers, NIRDP are hosting a Money Talk in collaboration with Money Helper, featuring a Lived Experience Panel exploring the hidden costs of disability.

🗓 Thurs 20 Nov 2025
🕖 6PM
📍 Online
🔗 Sign up: https://forms.office.com/e/Ls9hA8ZfFW

Thank you NIRDP for hosting!
A promotional poster for an online event titled “Money Talk”. The event has been organised by Money Helper and the Northern Ireland Rare Disease Partnership (NIRDP). The background is pink, blue and purple with abstract brush strokes. At the top are the two organisation logos for Money Helper and the Northern Ireland Rare Disease Partnership. Large text under the logos reads “Money Talk”. A graphic of a hand holding a pink credit card and another hand holding a card machine appear below. A cloud-shaped graphic on the left contains the word “Online” with a Wi-Fi symbol. Another cloud on the right lists the event details: “Date: 20th November 2025, Time: 6:00 PM”. At the bottom, the text reads: “Panel Discussion Theme: Hidden cost to disability”.
November 19, 2025 at 1:02 PM
addisonsdisease.bsky.social
Bone health is especially important for those with Addison’s or adrenal insufficiency, and there are plenty of ways to help protect your bones.

☀️ Get enough calcium & vitamin D
🚶 Try weight-bearing exercises
🍏 Maintain healthy lifestyle habits

Read more ➡️ www.addisonsdisease.org.uk/bone-health
Bone Health Matters: What You Need to Know
Due to the lifelong need for steroid replacement therapy & other risk factors, people with adrenal insufficiency may be at risk of developing osteopenia or osteoporosis. The good news is, there are plenty of ways you can help protect and strengthen your bones.
www.addisonsdisease.org.uk
November 19, 2025 at 9:01 AM
addisonsdisease.bsky.social
Due to the overwhelming response to Zöe's (@angliaruskin.bsky.social) initial research, she is offering another opportunity for people with Addison's disease to have their voices heard.

📝 You're invited to complete her online survey ⤵️
https://loom.ly/mg6OLYk
Research Survey: living well for adults with Addison’s
You are invited to take part in an online survey exploring what living well means to adults with Addison’s disease, led by Zöe Defoe from Anglia Ruskin University (ARU).
www.addisonsdisease.org.uk
November 18, 2025 at 6:30 PM
addisonsdisease.bsky.social
It's not too late to sign-up for tonight's Young People webinar! If you have Addison’s or adrenal insufficiency, join us this evening.

✨ Ages 13 to 18
📅 Tue 18 Nov, 7-8.30pm
📍 Online - free tickets ⤵️ https://loom.ly/hBNU_0I
Young People's Webinar: ages 13-18 - 18/11/2025 19:00:00
Free webinar for ages 13–18! Living with Addison’s or adrenal insufficiency while juggling school, friends and growing up isn’t easy. Connect with others, hear from experts, and get your questions answered.
www.addisonsdisease.org.uk
November 18, 2025 at 7:00 AM
addisonsdisease.bsky.social
On our blog, personal trainer Crystal shares her story with Addison's disease, including how exercise is a vital part of managing her condition. She discusses the benefits and impact it has, from bone health to mental health.

Read her experience ⬇️
www.addisonsdisease.org.uk/Blog/crystals-story
Crystal's Story: From Diagnosis into Strength - The Power of Exercise for My Addison’s
Crystal's journey with fitness took an unexpected turn five and a half years ago when she was diagnosed with Addison's. As a personal trainer, she’s learned to adapt, listen to her body, and find strength in vulnerability. Here, she shares her story.
www.addisonsdisease.org.uk
November 17, 2025 at 9:30 AM
addisonsdisease.bsky.social
Join Natalie's Christmas Coffee Morning in aid of our charity 🎄

📅 Sat 29 Nov, 10am - 12.30pm
📍 Mossley Methodist Church, OL5 0EX
💷 Entry: £1 (payable on arrival)

☕ Can't attend? Purchase a virtual coffee and cake to show your support 🔗 www.justgiving.com/page/festivecoffee25
November 14, 2025 at 9:01 AM
addisonsdisease.bsky.social
Hello from #BSPED2025 👋 Our amazing volunteer Ben, a Paediatric Nurse, ADSHG Trustee, & someone who has Addison's himself, is ready to speak with the healthcare community & raise awareness of adrenal insufficiency.

📍 Find us in the poster room, first floor.
🩺 Endo Hub ➡️ https://loom.ly/iDEBYgQ
A smiling man in a blue jumper and jeans stands beside an Addison’s Disease Self-Help Group (ADSHG) display table at the BSPED 2025 conference. The stand features a large banner outlining the charity’s aims, with the subheader "Helping You, Help Us". Bullet points list engaging patients, funding, lived experience, practical resources, and letters of support. The table is covered with an ADSHG branded purple cloth and displays leaflets, information packs, pens, and a bowl of chocolates! The BSPED 2025 logo and event dates (Wednesday 12 – Friday 14 November 2025) are visible in the bottom corner.
November 12, 2025 at 3:45 PM
addisonsdisease.bsky.social
Charity members, you’ve got mail 📩 Our Autumn ‘Keeping You Posted’ newsletter is here!

Packed with updates from paramedic training success, wellbeing webinar (watch back online), flu jab info & new GP leaflet & training injection kit. Read via the link in your email or on our online forum.
November 11, 2025 at 7:02 PM
addisonsdisease.bsky.social
You're invited! Take part in this 10-minute online survey on fatigue in adrenal insufficiency & Addison's, led by Prof @simonhspearce.bsky.social.

📝 Help improve understanding by sharing your experience. Find out more & take part ⤵️
https://loom.ly/sx-wfJE
Research Survey: Fatigue & Quality of Life
Help shape research into fatigue in adrenal insufficiency by taking part in this online research survey, led by Professor Simon Pearce, Newcastle University, in collaboration with the Addison's Disease Self-Help Group.
www.addisonsdisease.org.uk
November 11, 2025 at 12:02 PM
addisonsdisease.bsky.social
Just 1 week to go until our Young People webinar! ⏰ If you're aged 13-18 & live with adrenal insufficiency - join us to connect with others who 'get it', hear from experts & ask your questions.

📅 Tue 18 Nov, 7–8.30pm
📍 Online (Zoom)
➡️ Free tickets: https://loom.ly/hBNU_0I
Young People's Webinar: ages 13-18 - 18/11/2025 19:00:00
Free webinar for ages 13–18! Living with Addison’s or adrenal insufficiency while juggling school, friends and growing up isn’t easy. Connect with others, hear from experts, and get your questions answered.
www.addisonsdisease.org.uk
November 11, 2025 at 8:01 AM
addisonsdisease.bsky.social
Have you booked your #FluJab? This NHS vaccine is free for anyone who is steroid dependent, including those with Addison's and adrenal insufficiency.

Protect yourself and reduce your risk of becoming unwell and triggering an adrenal crisis ⬇️
www.addisonsdisease.org.uk/news/flu-vaccine-2025
Getting the Flu Vaccine
Say No to Flu! Book your vaccination today. There is no need to miss out, as it is free to people who are steroid dependent. Consultant Endocrinologist, Dr Prete, explains more about the importance of getting your winter vaccinations to stay safe.
www.addisonsdisease.org.uk
November 10, 2025 at 9:01 AM
addisonsdisease.bsky.social
If you have an idea to make life easier for those living with adrenal insufficiency, inc Addison's, this could be your chance to bring it to life & make a real difference in healthcare ✨

Apply for the NHS Patient Entrepreneur Programme (PEP). Find out more ⤵️
https://nhscep.com/pep/ | #NHSCEP
Patient Entrepreneur Programme - NHS Clinical Entrepreneur Programme
About us What is the Patient Entrepreneur Programme? The NHS CEP Patient Entrepreneur Programme (PEP) is a programme aimed at people with lived experience (as a patient or family carer) of a condition who have developed a new innovation to improve patient care. The programme aims to give individuals the skills and knowledge to develop …
nhscep.com
November 6, 2025 at 1:03 PM
addisonsdisease.bsky.social
This #TrusteesWeek we’re celebrating the incredible contribution of our Trustees!

Behind everything we do is a dedicated team who give their time & expertise selflessly, many with a personal connection to Addison’s or adrenal insufficiency. We couldn’t do it without them - thank you Trustees! 👏
November 4, 2025 at 10:47 AM
addisonsdisease.bsky.social
Morning @socendocrinology.bsky.social #ClinicalUpdate2025 👋 Visit us to learn about adrenal insufficiency, see our emergency injection kits in action & resources to support you & your patients.

📍 Find us in the lobby outside the ballroom (left from reception).
A female and male representative from the Addison’s Disease Self-Help Group (ADSHG) standing at their exhibition stand at the Society for Endocrinology Endocrine Academy 2025 event. The stand is covered with a purple ADSHG tablecloth, information leaflets and resources about adrenal insufficiency. A banner behind them reads ‘HELLO! It’s good to see you’ and promotes the Addison’s Disease Self-Help Group support resources.
November 3, 2025 at 10:59 AM
addisonsdisease.bsky.social
People with Addison's & adrenal insufficiency are at risk of harm & death if they don’t get their steroids on time. This #MedSafetyWeek, share @aace.org.uk & @rcem.ac.uk time-critical poster.

⏰Steroids➡️ https://loom.ly/_K9F74I
November 3, 2025 at 8:30 AM
addisonsdisease.bsky.social
This #FundraiserFriday, we’re celebrating Lucas, who took on an incredible 50K Ultra Marathon in support of the ADSHG - running in honour of his mum, who has Addison’s disease 💜

👉 Show your support and donate here 🔗 www.justgiving.com/page/lucas-bennett
October 31, 2025 at 9:01 AM