Addison's Disease Self Help Group (ADSHG)
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Addison's Disease Self Help Group (ADSHG)
@addisonsdisease.bsky.social
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The UK charity for all affected by Addison’s disease & adrenal insufficiency. 🗓 29 May: #AddisonsDiseaseDay 🎉#TeamAddisons 📲Learn more: #AddisonsQA
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Here's our Christmas card to you. Spreading joy, wellbeing, & awareness this festive season❄️ From the Addison's Disease Self-Help Group (ADSHG) 💜

Help us raise awareness of #AdrenalInsufficiency, a rare, life-threatening condition. Learn more & share➡️ www.addisonsdisease.org.uk/festive-wishes
December 24, 2025 at 8:01 AM
addisonsdisease.bsky.social
The ADSHG Connection, our newsletter for healthcare professionals, is out!

🚑 @rcem.ac.uk & Time Critical Meds
📊ADSHG impact
🎯Our 2026 focus & how to help
🔗Easy patient signposting

Read online ➡️ https://loom.ly/-93fPww | Please share to help spread the word!
Teal promotional graphic for The ADSHG Connection, a quarterly e-newsletter supporting Addison’s disease and adrenal insufficiency patients. White text reads “The ADSHG Connection – The quarterly e-newsletter helping you to support your Addison’s and adrenal insufficiency patients.” A large purple “Read now” button with a hand cursor appears in the centre. Text below lists “In this December 2025 issue:” followed by bullet points: RCEM & time critical medications; ADSHG impact in 2025; Get involved: injection training; Easy signposting to the ADSHG; Find our most popular resources. A circular illustration in the bottom right shows a winter scene with the ADSHG mascot in the middle and the words “Spreading joy, wellbeing and adrenal insufficiency awareness from the ADSHG.”
December 22, 2025 at 11:01 AM
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🎄 Before we sign off until the new year, we want to leave you with all the information you need on our festive closures, as well as where to find support if you need it.

We also want to say thank you for being part of the ADSHG, and we wish you and your loved ones a peaceful festive season 💜
Festive announcement titled “Festive Hours & Closures”, decorated with a string of colourful Christmas lights across the top. The sentence under the headline explains that the Addison’s Disease Self-Help Group (ADSHG) staff and volunteers will be taking a short break over the festive season. The first section in the main body of text states that the ADSHG team, including enquiries and membership services, closes on Friday 19 December 2025 and reopens on Monday 5 January 2026. The section below this titled “Online Charity Shop” states that orders received by 5pm on 23 December 2025 will be packaged and dispatched but will arrive after Christmas, and that no orders will be processed on UK Bank Holidays during the festive period. The last section, “Online Support Forum & Information”, notes that the online forum, website information and publications are available 24/7. It encourages visitors to connect with others over the festive break and directs those that are unsure where to start to the “SOS – Sanctuary of Support” page. To the right of the main section of text is the circular ADSHG logo with the word “Supporting” wrapped around it twice. Below this is a shopping trolley with the ADSHG logo inside, wearing a Santa hat. At the bottom is a festive message from all at the ADSHG wishing everyone and their loved ones a peaceful festive season. Underneath this is the website address for the Addison's Disease Self-Help Group: www.addisonsdisease.org.uk.
December 19, 2025 at 9:01 AM
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On our blog, we share the findings of vital research, which explores the experiences of people with adrenal insufficiency in managing adrenal crisis.

Read more and find out what this means ⬇️ www.addisonsdisease.org.uk/blog/behind-the-research-factors-influencing-self-management-of-adrenal-crisis
Behind the Research: factors influencing self-management of adrenal crisis
Aldons Chua, Endocrine Clinical Nurse Specialist, updates us on his published research looking at the factors influencing the self-management of adrenal crisis in patients with adrenal insufficiency.
www.addisonsdisease.org.uk
December 18, 2025 at 9:30 AM
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Our online forum is here to support you 🤝

Find your people in our community and connect with those who think and feel the same as you when it comes to adrenal insufficiency! Share experiences, make new friends and get help and advice.

Join the forum here ➡️ www.addisonsdisease.org.uk/online-forum
Informational graphic from the Addison’s Disease Self-Help Group (ADSHG) reminding users about their online forum. The background is teal with the headline “Our Online Forum is here to support you.” A graphic of a smartphone shows the ADSHG online forum webpage. Above the smartphone are two icons, each featuring a white heart in a red speech bubble. The icon on the left is slightly bigger in size than the one on the right. To the right of the smartphone, there is some text which highlights three key benefits of the online forum: “Vibrant community of ADSHG members,” “Share experiences and ask questions,” and “Get advice from those who understand.” Each bullet point is in bold black text on a white rounded text box. The circular colour logo for the ADSHG appears in the top right corner. At the bottom, in the format of a search bar with a small magnifying glass icon, is the following website address: www.addisonsdisease.org.uk/online-forum.
December 17, 2025 at 9:30 AM
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🧵1/3: Members have reported that Accord 10mg hydrocortisone tablets can crumble when split, raising concerns that they are not receiving the right dose.

Not everyone uses this brand, so it may not affect you. If you are having issues raise a Yellow Card report via 🔗 https://loom.ly/AkLdeC0
A collage of hydrocortisone tablet boxes from different manufacturers, showing various strengths including 10 mg, 5 mg and 2.5 mg. The packaging is in multiple colours (grey, purple and white), each labelled “Hydrocortisone Tablets,” with braille on the boxes and tablet counts of 30 displayed.
December 16, 2025 at 1:30 PM
addisonsdisease.bsky.social
Does your Christmas tree promote steroid-dependent patient safety?!

We love this tree by the Endocrine Specialist Nurses at @sth.nhs.uk, with homemade NHS Steroid Emergency Card decorations🎄

Learn more ➡️ www.addisonsdisease.org.uk/steroid-emergency-cards
A decorated Christmas tree standing in a hospital. The tree is lit with warm white lights and decorated with red and gold baubles, tinsel, and several NHS Steroid Emergency Cards hanging as ornaments. A gold star sits on top of the tree. In the bottom left corner, on top of the Christmas tree photo, is an image of the NHS Steroid Emergency Card. A close-up view of an NHS Steroid Emergency Card hanging from a Christmas tree branch with a gold ribbon. The tree is also decorated with lights and red and gold baubles. The website www.addisonsdisease.org.uk/steroid-emergency-cards is shown at the bottom of the image
December 12, 2025 at 9:01 AM
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Cases of flu in hospitals are still rising, so get your free NHS flu jab to reduce your risk of going to hospital whilst it's so busy.

Dr Prete explains the importance for people with steroid dependency to reduce the risk of adrenal crisis 👉https://www.addisonsdisease.org.uk/news/flu-vaccine-2025
December 11, 2025 at 7:02 PM
addisonsdisease.bsky.social
Our ‘Buy a bauble’ campaign is in full swing 🎄

Thanks to everyone who has already donated. If you haven’t had a chance yet, there’s still time! Every donation adds a virtual bauble to our tree & brings us closer to our goal.

💫 Buy a bauble today: https://www.justgiving.com/campaign/buyabauble25
Buy a bauble 2025
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 11, 2025 at 10:30 AM
addisonsdisease.bsky.social
On #NobelPrizeDay we’re celebrating the amazing things that happen when we work together.

🧬 The work of Reichstein, Kendall & Hench continues to inspire our commitment to fund endocrinology research. Learn more about our grants & how to apply 👉 www.addisonsdisease.org.uk/research
A graphic titled “Today in History” featuring three black-and-white portrait photographs from the Nobel Foundation archive. The photograph on the left is of Edward Calvin Kendall, in the middle is Tadeus Reichstein, and on the right is Philip Showalter Hench. Below the photos, on a grey background, the headline reads: “The Nobel Prize in Physiology or Medicine 1950”. Underneath the headline is the quote: “Discoveries relating to the hormones of the adrenal cortex, their structure and biological effects.” At the bottom is the Addison’s Disease Self-Help Group (ADSHG) white circular logo and the website URL: www.addisonsdisease.org.uk/research. At the bottom right is a circular, illustrated icon showing the adrenal glands and kidneys.
December 10, 2025 at 10:01 AM
addisonsdisease.bsky.social
The festive season can feel overwhelming, especially when you’re also dealing with adrenal insufficiency.

For support, watch our Wellbeing Webinar, in collaboration with @raremindsuk.bsky.social ⬇️
www.addisonsdisease.org.uk/news/wellbeing-webinar-with-rareminds
Watch back! Wellbeing Webinar with Rareminds
Watch back our webinar in collaboration with Rareminds, exploring the emotional challenges of living with adrenal insufficiency & learn practical ways to support your wellbeing.
www.addisonsdisease.org.uk
December 9, 2025 at 9:01 AM
addisonsdisease.bsky.social
💡 Did you know that many inspiring people live with (or have lived with) Addison's or adrenal insufficiency?

On our Famous Lives page, we share some of their stories, from athletes to world leaders.

Take a look and see if you recognise any names ⬇️ www.addisonsdisease.org.uk/famous-lives
Famous Lives
As Addison's disease and adrenal insufficiency are rare endocrine conditions, it can be reassuring to learn about public figures who share these experiences. Explore the stories of celebrities, athletes, and politicians who have Addison's or adrenal insufficiency and gain insight and inspiration from their journeys
www.addisonsdisease.org.uk
December 8, 2025 at 2:04 PM
addisonsdisease.bsky.social
Genetic Alliance UK is exploring what equity means for people living with rare conditions as part of their #RareDiseaseDay 2026 campaign.

💭 To show the stories behind the statistics, they want to hear your experiences. Click to take part ⤵️
https://loom.ly/yKiNx2Q
Genetic Alliance UK | Rare Disease Day 2026 survey
Please take a few minutes to take our survey.
www.smartsurvey.co.uk
December 5, 2025 at 9:01 AM
addisonsdisease.bsky.social
Do you work in physical health?

We’re improving our exercise resources for people with adrenal insufficiency & want to hear from physios, personal trainers, occupational therapists & other professionals who can help us shape them.

Please sign up via 👉https://addisons.beaconforms.com/form/047010a5
A pair of bright pink running shoes sits on a gym bench next to a blue water bottle, colourful dumbbells and an emergency hydrocortisone injection kit is placed inside one trainer. Over the image, text reads: “Calling all physical health professionals – Help people with adrenal insufficiency move with confidence.” At the bottom, more text says: “Physios, personal trainers, occupational therapists… Sign up & shape our exercise resources,” alongside the Addison’s Disease Self-Help Group logo.
December 4, 2025 at 9:01 AM
addisonsdisease.bsky.social
🌍 Let's raise awareness this #InternationalDayOfPersonsWithDisabilities!

It's essential that those with Addison's or adrenal insufficiency carry an emergency injection kit.

💉 Learn more about injection kits 👉 www.addisonsdisease.org.uk/the-emergency-injection-for-the-treatment-of-adrenal-crisis
December 3, 2025 at 10:01 AM
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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
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📣 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