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addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG)
@addisonsdisease.bsky.social
250 followers 110 following 210 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
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 2d
Tonight in the UK the #ClocksGoBack! Here are some reminders for those with Addison's and adrenal insufficiency:

🌙 Change your clocks before bed so your morning dose matches the new time.
💊 On Sunday, make sure the clocks in your house are correct.
🔔 Check alarms you have for remembering doses.
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 4d
💬 “Within 24 hours I felt different… I had energy again.”

Ruth, a retired clinical psychologist shares her journey with tertiary adrenal insufficiency (TAI), after years of treatment for severe asthma. She reflects on the impact of her diagnosis & learning to adapt.
https://loom.ly/ZkBTL_o
Ruth's Story: Tertiary Adrenal Insufficiency
Ruth shares her diagnosis of tertiary adrenal insufficiency (TAI) as well as the scientific evidence for TAI, which she hopes will help others who have the same diagnosis understand their condition.
www.addisonsdisease.org.uk
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 4d
Last chance to sign up for our free online Paramedic Training session ⏰

Learn more about Addison's, adrenal insufficiency, and the emergency management of adrenal crisis.

📅 Tue 28 Oct 2025, 1-2.15pm
⬇️ Register now
www.addisonsdisease.org.uk/Event/paramedic-training-28-october-2025 | #ParaCPD
Paramedic Training: 28 October 2025 - 28/10/2025 13:00:00
A Zoom session focusing on adrenal crisis and the emergency management of steroid dependency for patients with Addison's disease and adrenal insufficiency.
www.addisonsdisease.org.uk
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 5d
📢 Raise awareness this #InvisibleDisabilitiesWeek.

People with hidden conditions, like Addison's and adrenal insufficiency, may be struggling to manage symptoms, but when you see them in the street you wouldn’t know anything is wrong.

Share your experiences of living with a hidden condition ⬇️
An awareness graphic with the title “Invisible Disabilities Week" in the centre in bold, purple text. This headline is in a lilac text box. Underneath are the dates of when the awareness week is taking place: "19 – 25 October 2025”. This is also in purple text. The image is divided into four quadrants, each highlighting challenges faced by people with invisible disabilities: 1. "Following a medication routine" with images of an NHS steroid card, a tablet packet and hydrocortisone powder injection medication. There is also a small emergency injection kit from the Addison’s Disease Self-Help Group (ADSHG). 2. "Balancing energy levels" with a nearly empty battery icon and sleep symbols. 3. "Dealing with daily symptoms" with a heart, warning sign, and the circular Addison’s Disease Self-Help Group logo. 4. "Managing medical appointments & admin” with a stethoscope and a hospital building icon. The background is white with a teal and purple border around the outside.
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 6d
It's not too late to sign-up for tonight's parents and under 12's webinar! If your child has Addison’s or adrenal insufficiency, join us this evening.

✨ Parents of children of all ages are welcome!
📅 Tonight - Tuesday 21 October, 7-8.30pm
📍 Online (Zoom)
➡️ Free tickets: https://loom.ly/dm7tCU4
Young People's Webinar 2: Under 12s & Parents - 21/10/2025 19:00:00
Webinar for u12s with a diagnosis of Addison's or adrenal insufficiency and their parents, as well as parents of older children with adrenal insufficiency. Facilitated by Paediatric endocrine specialists Kate Davies & Karen Thompson, and organised by the ADSHG.
www.addisonsdisease.org.uk
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 6d
Preparing for appointments helps you get the most out of that vital time with your endocrinologist. Read our top tips ⬇️

Get more advice & download the @socendocrinology.bsky.social Consultation Reference Guide here 🔗 www.addisonsdisease.org.uk/medical-summary
A smartphone screenshot of a note titled "How to make the most of your endocrinology appointments", created by the Addison’s Disease Self-Help Group (ADSHG). The note includes a list of five tips, each starting with an emoji: 📖 "Read the Society for Endocrinology & ADSHG Consultation Reference Guide" 💊 "Take a list of your current medications & diagnoses, your own medical CV!" ❓ "Make a note of the top 3 things you want to get out of your appointment" ✍️ "Write down your top 3 symptoms and the impact they have on your daily life" 🔗 "Visit our website for more tips & resources: www.addisonsdisease.org.uk" The note was created on "21 October 2025 at 10:00", as it states above the title. To the left of this, there is a yellow back button with the word "Notes" beside it. At the top right, there is the circular ADSHG logo, which has a teal and purple design. Next to this, there is the grey share icon and above are the signal, Wi-Fi and battery symbols. At the bottom, in small black text, it says "Addison’s Disease Self-Help Group (ADSHG)."
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 10d
This #FundraiserFriday, we’re celebrating Gill's fundraising achievement! 🎉

To mark her five-year “addi-versary,” Gill set herself a huge step challenge & smashed it with 823,081 steps, over 200K more than she planned 💪

💫 Support Gill 🔗 www.justgiving.com/page/gill-mauchline-steps-for-addisons
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 14d
Young People webinar (ages 13-18) postponed ⏰

Due to one of our panel member's being unwell, we've unfortunately had to postpone the first of our Young People webinars until Tuesday 28 October at 7-8:30pm.

💻 Your Zoom meeting link will still work on this new date, we hope you can join us!
A promotional graphic with the title "Young People Webinar" in bold black text. Underneath are the words "Living with Addison's disease & adrenal insufficiency" in a cursive font. There is a large red "POSTPONED" stamp diagonally across the graphic. The event is for ages 13-18 and was originally scheduled for Tuesday 14 Oct at 7pm. At the right side, there is a large cartoon illustration of a young person sitting cross-legged looking at a laptop. At the bottom, a website URL is shown: www.addisonsdisease.org.uk/events. The faded logo in the background is for the Addison's Disease Self-Help Group (ADSHG).
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 17d
This #WorldMentalHealthDay, catch up on our You & Your Emotional Wellbeing webinar with @raremindsuk.bsky.social.

🎥 Covering a range of important topics, watch to discover practical tools and advice, plus much more ➡️ https://www.youtube.com/watch?v=YPnmRkmkz9w
Promotional graphic titled “Watch Our You & Your Emotional Wellbeing Webinar.” Beneath this headline, in italic script, the text says: "in collaboration with” followed by the blue logo for the charity Rareminds. Their tagline reads: "Mental Health for the Rare Disease Community." Below this, there's an illustration of an open laptop. On the screen, the bold text reads: "Welcome to the You & Your Emotional Wellbeing Webinar." There are two circular logos on the screen: one for the Addison’s Disease Self-Help Group and one for Rareminds. Underneath these are the website addresses for each charity: www.addisonsdisease.org.uk and www.rareminds.org. There's a red rounded button below the laptop with a white play icon and bold white text, which reads: "CATCH UP NOW." The background is an enlarged and faded version of the Addison’s Disease Self-Help Group logo.
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 17d
This #FundraiserFriday, let's cheer on Eve and her family! 🙌

Tomorrow, they’re taking on an inflatable 5K, the 2nd event in their series of 3 fundraising challenges to mark 10 years since George was diagnosed with Addison’s.

💜 Show your support 🔗 www.justgiving.com/page/eve-cator-1
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addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 19d
Get social in Shoreham-by-Sea 🤗

Join our wonderful volunteer, Wendy, for a warm and welcoming ADSHG Members' Social Meeting by the sea.

📅 Sat 25 Oct, 10.30am - 12.30pm
📍 Shoreham-by-Sea
👥 ADSHG Members Only

💫 RSVP here 🔗 https://www.addisonsdisease.org.uk/Event/social-shoreham-by-sea-oct
Social Meeting: Shoreham-by-Sea (25 October) - 25/10/2025 10:30:00
Join Wendy at her ADSHG Members Social Meeting in Shoreham-by-Sea on Saturday 25 October.
www.addisonsdisease.org.uk
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 20d
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 14 Oct, 7–8.30pm
📍 Online (Zoom)
➡️ Free tickets: https://loom.ly/hBNU_0I
Illustrated poster for a "Young People Webinar: Living with Addison’s disease & adrenal insufficiency." It states the event is for ages 13–18 on Tuesday 14 October at 7pm. The design features a cartoon of a young person sitting cross-legged using a laptop. At the bottom is a website link: www.addisonsdisease.org.uk/events
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 21d
Our life-saving Steroid Emergency Card has a fresh new look! 🚨 Wallet-sized & fold-out, the card clearly shows your steroid dependency & provides adrenal crisis treatment guidance & QR link to the updated NICE guideline.

Available from our online shop ⤵️
https://loom.ly/9qFSBTk
2 Emergency wallet cards
The emergency wallet card is credit card sized and contains guidance based on the NICE Guidelines and reviewed by the ADSHG clinical advisory panel, on the treatment required to prevent an adrenal crisis in the event of serious injury or illness. Please also carry an NHS steroid card to complement this card.
d42c94-e0.myshopify.com
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 22d
A huge thank you to GC Components for their incredibly generous corporate donation of £2,500 to our charity! 🤝

We are so grateful for their support. Donations like this make a real difference 💜
Teal background and bold white text at the top reading 'Thank You!' followed by the ADSHG logo. In a white box is a quote from GC Components Ltd: 'GC Components Ltd is proud to support the ADSHG as a Corporate Donor. We hope our annual donation helps contribute to the fantastic work the charity does in supporting people living with Addison’s disease and adrenal insufficiency.' At the bottom, it is signed Gareth Walters, Managing Director, GC Components Ltd, alongside the GC Components logo.
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 24d
#FundraiserFriday - Today, we’re celebrating Scott, who took on the Berlin Marathon Inline Skating Competition in support of the ADSHG!

🤝 To donate, please visit 🔗 www.justgiving.com/page/scott-skates

We’re so grateful for Scott’s commitment and determination 💫
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 25d
Catch up on our Sick Day Rules webinar with The Pituitary Foundation! Presented by Endocrine Clinical Specialist Nurse Aldons Chua for #AddisonsDiseaseDay.
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🎥 Watch to learn more about the Sick Day Rules & hear the Top 5 questions as asked by you ➡️ www.youtube.com/watch?v=PYjjW1e0ADc&t=3s
Promotional graphic with the title “Watch Our Sick Day Rules Webinar.” Underneath this are the words, "with Aldons Chua, Endocrine Clinical Nurse Specialist." The background is a faded and enlarged version of the Addison's Disease Self-Help Group logo. In the centre is a graphic of an open laptop screen, showing a slide titled "Sick Day Rules." Above this is a red circular illustration that reads "Low Cortisol" and has an adrenal gland icon. Beneath the title, the slide reads: “for those with Addison’s disease & adrenal insufficiency.” Underneath this are two website links: www.addisonsdisease.org.uk and www.pituitary.org.uk. Fine print at the bottom of the slide includes charity registration numbers. A circular photo of Aldons Chua appears on the right side of the laptop screen. A red button above the laptop reads “Catch Up Now” with a play icon. At the bottom are three logos: the Addison’s Disease Self-Help Group logo, The Pituitary Foundation logo, and a purple and blue calendar illustration. This features the date "May 29", which is circled, and underneath says "Addison’s Disease Day."
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 26d
⏰It's time to book your #FluJab! This NHS vaccine is free for people living with steroid dependency (Addison's & adrenal insufficiency).

This is the best way to protect you, reduce your risk of becoming unwell & triggering an adrenal crisis⤵️
https://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
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 26d
Our festive Christmas cards are officially on sale TODAY! ✨

Our brand-new 2025 collection features six beautiful designs. Send greetings that truly matter this Christmas and support the ADSHG.

🛒 Available now (while stocks last!) 🔗 www.addisonsdisease.org.uk/shop
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 27d
⏰ It's the final day to sponsor a member this September!

For just £33, you can give someone a year of connection, trusted resources & access to a supportive community that understands life with Addison's & adrenal insufficiency.

Donate now 🔗 https://www.justgiving.com/campaign/sponsoramember2025
Sponsor a member this September
This September, we’re fundraising to fund Sponsored Memberships for people living with Addison’s disease and adrenal insufficiency who are facing severe financial hardship. Could you donate £33 to sponsor a member for a year?
www.justgiving.com
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 28d
Cortisol replacement, is there a better way? Dr Prete explains more about Efmody®, a hydrocortisone modified-release hard capsule, from how it is taken, to the promising results shown in a clinical trial for people with Addison’s disease.
➡️ www.addisonsdisease.org.uk/blog/research-update-efmody2025
A presentation slide is being shown during a medical research event. A speaker stands at a podium presenting to an audience, with the slideshow to his right. At the top, there is a white banner with large purple text reading, "RESEARCH UPDATE." Below, in cursive-style black text, it says, "Efmody®. Cortisol replacement. Is there a better way?" The slide projected on the wall behind the speaker is titled "Cortisol profile & hydrocortisone replacement." It features a graph with the title "Standard Hydrocortisone." Notes on the slide include "The late-night/early-morning cortisol rise is not replicated", as well as "Low control upon awakening", and "Symptoms of low cortisol are common." At the bottom-left corner is a circular logo for the Addison’s Disease Self-Help Group (ADSHG), which sits over a purple banner that runs along the bottom edge. An informative graphic about Efmody®, a cortisol replacement therapy, with a quote from Dr Alessandro Prete and a photo of a medical presentation. At the top, is a pale purple text box with rounded corners and an opening quotation mark at the top left. The box contains a long quote, which reads: “Efmody® is hydrocortisone, but designed in a very clever way! The tablet is a modified-release hard capsule. When the patient takes the capsule, the capsule resists the acid of the stomach, so it is not broken down and instead starts to be released when it goes into the small intestine. It’s possible that with this overnight, slow-release formula, we could avoid not only those morning symptoms but also experience a safer, improved quality of life. All with the additional benefit of only having to take two tablets a day – waking and bedtime.” Underneath the quote are the words: "Dr Alessandro Prete Efmody®. Cortisol replacement. Is there a better way?" Below the text box, is a photo of speaker Dr Alessandro Prete. He is standing at a podium next to a presentation slide, giving a talk to an audience. Behind Dr Alessandro Prete, the slide projected on the wall has the title: "Cortisol profile & hydrocortisone replacement." It features a graph with the title "Standard Hydrocortisone." Notes on the slide include "The late-night/early-morning cortisol rise is not replicated", as well as "Low control upon awakening", and "Symptoms of low cortisol are common." At the bottom of the image, there is a search bar graphic with a magnifying glass icon. The search bar contains a page address for the Addison's Disease Self-Help Group (ADSHG) website: www.addisonsdisease.org.uk/blog/research-update-efmody2025. There is a purple cursor pointing to the link.
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 29d
We need you! Zöe (who has Addison’s herself) is researching what ‘living well’ means for adults with Addison’s.

She’s looking for volunteers who have Addison's and would be happy to take part in a confidential one-to-one interview. Find out more ⤵️
https://loom.ly/rOSWV5U
Research Opportunity: living well for adults with Addison’s
You are invited to take part in this research study exploring what living well means to adults with Addison’s disease, led by Zöe Defoe from Anglia Ruskin University (ARU).
www.addisonsdisease.org.uk
addisonsdisease.bsky.social
Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · Sep 27
Whether you’re a parent or young person, we have two upcoming webinars just for you! Led by experts & those with lived experience, come along & ask your questions.

💻 14 Oct: Young people ages 13-18
👨‍👩‍👦 21 Oct: Parents & under 12’s
RSVP ➡️ https://loom.ly/sJRfK9k
Poster advertising Young People & Parents Webinars about living with Addison’s disease and adrenal insufficiency. Black webinar icons then list the webinars available: Ages 13–18 years old – Tuesday 14 Oct, 7pm Under 12’s & Parents – Tuesday 21 Oct, 7pm. In the centre, a male in his 40s and young man in his teens are smiling people hold a purple and teal selfie frame with the hashtag #AddisonsQA. At the bottom is a web link: www.addisonsdisease.org.uk/events
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · Sep 26
We’re delighted to share that the @HSFCharity has awarded us a £2,000 grant to deliver 5 Adrenal Crisis Management Paramedic Training Sessions in 2026/27 🚑

By raising awareness among emergency services, these sessions can improve care, build confidence & potentially save lives!
Graphic with a purple header that says 'Thank You' in bold white letters. Below is the logo of The Hospital Saturday Fund, featuring a blue circular design with 'HSF' in the centre. Text reads: 'Thank you to The Hospital Saturday Fund for funding five of our Adrenal Crisis Management Paramedic Awareness Training Sessions.' At the bottom, there is a yellow and green ambulance icon and a website link: www.addisonsdisease.org.uk/paramedic-training In the top right corner is a circular logo for the Addison’s Disease Self-Help Group with the words 'Supporting' around it. Graphic with a purple header that says 'Online Paramedic Training Hosted by the Addison's Disease Self-Help Group (ADSHG) Charity' in bold white letters. Below is a speech bubble with the quote: "Incredibly engaging, information was pitched at the right level and showed a good understanding of the ambulance service and what we need to know. Personal experiences made it even more tangible and realistic to us. A very well-presented session, efficient yet human, about a subject I knew too little about. Lots of useful, practical information." At the bottom, there is a yellow and green ambulance icon and a website link: www.addisonsdisease.org.uk/paramedic-training In the top right corner is a circular logo for the Addison’s Disease Self-Help Group.
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · Sep 25
Have a question? Please email it in before the end of today! ⏰

Join our @raremindsuk.bsky.social wellbeing webinar for more support on the emotional challenges of living with Addison's & adrenal insufficiency.

➡️Register & send your Q's: https://loom.ly/0wdLVaI
A promotional graphic for a mental health webinar hosted by Rareminds and the Addison’s Disease Self-Help Group. The design shows a smartphone with a chat-style conversation. Blue speech bubbles read: “Hey, I’ve not been feeling myself lately…” and “It’s hard to manage everything, I feel overwhelmed.” Yellow speech bubbles reply: “We’re here for you, what’s on your mind?” and “It might help to talk to someone who ‘gets’ rare conditions. Join us for a chat and you can ask any questions too.” At the bottom, text reads: “Tuesday 30 September 2025 | 7–8.30pm | Online” with a web link: www.addisonsdisease.org.uk/events
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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · Sep 24
Did you know your adrenal glands make life-saving hormones? In Addison’s disease & adrenal insufficiency, they stop working, so people must take time-critical daily steroid medication.

💊 “Tablet time” is life-saving! Learn more ➡️ https://www.addisonsdisease.org.uk/what-is-addisons-disease
Infographic from the Addison’s Disease Self-Help Group (ADSHG) showing the adrenal glands, which sit above the kidneys, and the three essential steroid hormones they produce. The glands are highlighted on a body diagram. Text reads: “Adrenal glands. The adrenal glands produce 3 essential steroid hormones.” Below are three boxes: Cortisol: “Cortisol is life-essential. It helps control your metabolism, blood sugar, energy, appetite and stress.” Aldosterone: “Aldosterone helps the body manage its blood pressure and salt/fluid balance.” DHEA: “DHEA is important to help give the body stamina and libido.”
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