During Addison's Disease Day on 29th May (previously known as International Addison's Day) people with Addison's or adrenal insufficiency around the world shared pictures of their kits as part of our #ShareYourKit campaign. 

It's important to talk about kits, educate your families and carers and emergencies, and prepare 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 the extra hydrocortisone and other care they need to recover. 

Find out more about Emergency Injection Kits

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 lead 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 and Society for Endocrinology, for the prevention of an acute adrenal crisis.

Please share these resources with your health professionals and bring the subject up again, even if they've said no before. Below is  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. You may wish to highlight to them the section in the guidance which says: "Hydrocortisone IM for emergency use should be added to the patient's prescription for patients with primary adrenal insufficiency and those with hypothalamo-pituitary disease for emergency use. In addition, patients should be issued with extra oral hydrocortisone for emergency use."

We have more information on "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

Pulse Today article by ADSHG Medical Trustees: issue March 2021 pgs 34-35.

Getting it all together

From tupperware boxes to purpose made bags, wallets and cleverly arranged elastic bands, we saw lots of great examples of 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.

Scroll, have a browse and get some inspiration!

Below we've brought together a range of kits our followers have shared on social media. Have a look at how others have tackled the challenge, and how kits can very depending on your needs. A big thank you to everyone whose brilliant kit post is featured below:

 

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!

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! 

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