During Addison's Disease Day on 29 May, we started our #ShareYourKit campaign, asking people with Addison's disease or adrenal insufficiency around the world to share pictures of their hydrocortisone emergency injection kits.

It's important to talk about kits, be confident in using them, educate friends, family and those who support you and of course - to have prepared your own kit.

It was reassuring to see so many people had been prescribed the injectable hydrocortisone, needles, syringes, vial snaps, water vials and printed instructions they need to self-manage an adrenal crisis if they have to wait a long time for an ambulance or are not able to quickly reach an A&E department to promptly provide them with the extra hydrocortisone and other care they need to recover. 

Find out more about Emergency Injection Kits

Keep reading to see other #ShareYourKit stories from our community!

Getting started

We estimate that at least 1,700 people in the UK are without a kit, many explaining on Twitter and Facebook on Addison's Disease Day that their GP or Endocrinologist has said they didn't need one as they lived close to a hospital. We know from our members that this assumption has led to delayed treatment and worse consequences for people with adrenal insufficiency. 

Provision of a hydrocortisone emergency injection kit is standard practice and is the advice given by the ADSHG Clinical Advisory Panel, Society for Endocrinology, on the NHS page for Addison's disease and in the RCGP eModule, for the prevention of an acute adrenal crisis.

Not prescribed an injection kit?

Please share these resources with your health professionals and bring the subject up again, even if they've said no before. Below are some links to further medical guidance providing vital information on the prevention and emergency management of adrenal insufficiency along with the National Patient Safety Alert regarding steroid safety which you can send on to them.

We also have step-by-step instructions for you as a person living with Addison's or adrenal insufficiency to follow under "What to do if you are refused an injection kit" on our injection kit page on our website.

National Patient Safety Alert

Guidance for the prevention and emergency management of adult patients with adrenal insufficiency.

Society for Endocrinology Adrenal Crisis page

RCGP eModule - free education for GP's.

NHS Website - treatment guidance

Getting it all together

From tupperware boxes to purpose made bags, wallets and cleverly arranged elastic bands, we've seen lots of great examples with storage solutions to suit all! Depending on your budget or how creative you are, there are so many options. See more step-by-step advice on creating your kit at home on our "Preparing your own Emergency Kit" blog.

In each edition of our members magazine, we feature a member of our amazing community, as they show us how they store and carry their kit, to help encourage us to keep our kits with us at all times and normalise this potentially scary situation.

Submit your #ShareYourKit to be featured and raise awareness!

Scroll, have a browse and get some inspiration!

Below we've brought together a range of kits our followers have shared on social media as well as our blog posts. Click on an image below to be taken to individual #ShareYorKit blog post and have a look at how others have tackled the challenge, with kits varying depending on your needs. A big thank you to everyone whose brilliant kit post is featured below.

#shareyourkit
3 crises in 3 weeks, 3 vials.
My kit saved my life.🦋@AddisonsUK #internationaladdisonsday pic.twitter.com/fqKZW8HNFs

— Corrinne (Reenie) (@reenie_rocks) May 29, 2020

#shareyourkit #addisonsdisease #invisibleillness #chronicillness #InternationalAddisonsDay my little kit I keep at home. Never needed it so far. The little red tub is what I carry with me everywhere with additional meds pic.twitter.com/WgSNd6J3jf

— Emma Guy (@fairy_el) May 29, 2020

today is #InternationalAddisonsDay

to raise awareness, we are sharing our emergency kit. it comes with us all the time in case we have a crisis

mine contains all of my daily medication, 2 pill pots and my injection supplies (I carry 2 needles and vials) #ShareYourKit pic.twitter.com/3zbOVzTBOf

— Ru 🍒 (@roofulness) May 29, 2020

@AddisonsUK @NHS @TeamYgc
#InternationalAddisonsDay #29thMay#emergencyinjectionkit
Mine consists of an excellent folder from https://t.co/zrUMpowcD3 and a red padded holder - on line auction pic.twitter.com/xOdB9R5c5g

— Jane (@janefcassidy) May 26, 2020

This Friday is #InternationalAddisonsDay, raising awareness for all types of adrenal insufficiency. Join in and #ShareYourKit - Show others how you store your emergency injection kit and normalise this potentially scary situation @AddisonsUK pic.twitter.com/N6zj3HMOJz

— The Pituitary Foundation (@Pituitary_org) May 27, 2020

#shareyourkit pic.twitter.com/MfjI2rJc54

— Claire Plumb (@ssunflowersgirl) May 29, 2020

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! 

Join the ADSHG 

Say hello! Follow us on Twitter, Facebook, Instagram, LinkedIn and YouTube.