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  • Newly diagnosed? We are here to help.
  1. About Addison's Disease
  2. Newly diagnosed?

Newly diagnosed? We are here to help.

Are you newly diagnosed with Addison's Disease or adrenal insufficiency? We are here to help.

Become a member

The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland. We aim to support our members to manage their condition and to promote better medical understanding of Addison's, working in co-operation with leading adrenal specialists.

By joining as a member, you get access to a range of additional resources and support for your condition. You'll also be joining a vibrant, supportive, engaged community of people affected by Addison's. Together, we're stronger.

Become a member

Get Ready

Diagnosis can stir a range of emotions from relief to fear. It's important to learn as much as you can about the condition - this knowledge may save your life.

Newly Diagnosed? Get Ready!

Adrenal crisis can kill - be prepared

Around 8% of people with Addison's Disease experience an adrenal crisis each year; some people more frequently than others. It's vitally important you learn the signs of an impending crisis and what to do in this medical emergency.

Newly Diagnosed - What Is Adrenal Crisis

Emergency Advice

Understand the "sick day rules"

People with adrenal insufficiency are particularly vulnerable to adrenal crisis being triggered by seemingly "minor" ailments, including vomiting, diarrhoea, colds & flu. It's important to recognise the early symptoms of a bug or cold and adjust your steroid replacement medication accordingly.

Newly Diagnosed - Sick Day Rules

Know how to work with your doctor & paramedics

As Addison’s is a rare condition, your GP may never have treated a patient with this before. The ambulance services in United Kingdom & Ireland are continually improving their support of people with Addison's, thanks to the lobbying and advocacy of our charity and its volunteers over recent years. 

Newly Diagnosed - Work With Your Doctor

Newly Diagnosed - Register with your Local Ambulance Service

Be kind to yourself

These articles provide practical advice for people with Addison's Disease, particularly in the weeks following diagnosis.

  • So just how do you tell your family & friends...
  • Coping with... psychological stress
  • Words for feeling better - or worse

Published: 14th November, 2019

Updated: 18th December, 2019

Author: Anonymised User

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Latest

  • Preparing your own Emergency Kit for Addison's or Adrenal Insufficiency - 16/04/2021

    Preparing your own Emergency Kit for Addison's or Adrenal Insufficiency - 16/04/2021

    Preparing an emergency kit is something every person with Addison's or Adrenal Insufficiency should do once they have a diagnosis. Kits are sometimes provided ready-made by medics and can also be purchased online. Here we help you create your own emergency kit in seven steps.

  • Useful links to other organisations

    This section provides electronic links to the websites of other organisations in the UK and around the world that provide support and information to people with Addison's and adrenal insufficiency. As many people with Addison's also live with other autoimmune conditions too, we have included some links to relevant patient groups for these conditions.

  • Novel Coronavirus (COVID-19) - 16/04/2021

    Novel Coronavirus (COVID-19) - 16/04/2021

    Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.

  • Becca’s positive pants 10 mile walk

    Becca’s positive pants 10 mile walk

    To show how far I’ve come since my diagnosis nearly 3 years ago... from not being able to stand in the shower let alone walk 10 miles.

Related

  • Novel Coronavirus (COVID-19) - 16/04/2021

    Novel Coronavirus (COVID-19) - 16/04/2021

    Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.

  • Receiving the COVID-19 Vaccine - Personal Stories

    Receiving the COVID-19 Vaccine - Personal Stories

    The COVID-19 vaccination campaign has kicked off - but what does it feel like to receive the COVID-19 vaccine? People with Addison's and adrenal insufficiency share their experiences of receiving the vaccine.

  • Vaccines and Adrenal Insufficiency

    Vaccines and Adrenal Insufficiency

    Vaccines and Adrenal Insufficiency - if you have Addison's Disease or another form of adrenal insufficiency, which vaccines should you have? Is it safe to be vaccinated? What do you need to know before you go for a jab?

  • Katy & Sophie-Louise's Story:

    Katy & Sophie-Louise's Story: "My Rare Disease" Podcast

    "My Rare Disease" podcast creator Katy shares the inspiration behind starting this fantastic awareness podcast, and we catch up with Sophie-Louise about her episode discussing her experiences with Secondary Adrenal Insufficiency.

  • Updated NHS Steroid Card Released

    Updated NHS Steroid Card Released

    Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!

  • The Emergency Injection for the treatment of Adrenal Crisis

    The Emergency Injection for the treatment of Adrenal Crisis

    Understanding what an Emergency Injection kit is, how to inject and how important it is to use the injection during an Adrenal Crisis.

  • Addison's wins Commended in the 2019 BMA Patient Information Awards. - 25/09/2019

    Addison's wins Commended in the 2019 BMA Patient Information Awards. - 25/09/2019

    We’re delighted to announce "Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals", has been commended by the 2019 BMA Patient Information Awards.

  • An update on our websites - 13/08/2019

    An update on our websites - 13/08/2019

    We launched our new website, addisonsdisease.org.uk earlier this year. Since then you’ve been sharing your thoughts and ideas about how we can improve it.

  • Climbing Mont Blanc

    Climbing Mont Blanc

    In June 2015, Stuart Jones and his friend Richard Topping climbed Mont Blanc, the highest peak in Western Europe, to raise money for the ADSHG and Great Ormond Street Hospital. Stuart has Addison’s himself, so this was an amazing achievement and we are so grateful to them for choosing to support us in this way.

Most read

  • Updated NHS Steroid Card Released

    Updated NHS Steroid Card Released

    Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!

  • New Video: Managing medication and COVID-19 - 29/03/2020

    New Video: Managing medication and COVID-19 - 29/03/2020

    In our latest video, ADSHG Trustee and Professor of Endocrinology explains how to manage your medication should you get ill in the coming weeks.

  • Behind the News: Hydrocortisone as a Covid-19 Treatment - 09/12/2020

    Behind the News: Hydrocortisone as a Covid-19 Treatment - 09/12/2020

    In recent days, UK news networks have been sharing a story about new studies hailing Hydrocortisone as a Covid-19 treatment. We asked our medics to review the research and the emerging stories so that we can give you a balanced perspective while also updating you on any impacts to the drug supplies we depend on.

  • ADSHG in The Guardian - Rare Diseases edition!

    ADSHG in The Guardian - Rare Diseases edition!

    We are delighted that our article "Think Addison's disease - save a life", is featured in today's Guardian newspaper Rare Diseases supplement!

  • Receiving the COVID-19 Vaccine - Personal Stories

    Receiving the COVID-19 Vaccine - Personal Stories

    The COVID-19 vaccination campaign has kicked off - but what does it feel like to receive the COVID-19 vaccine? People with Addison's and adrenal insufficiency share their experiences of receiving the vaccine.

  • New UK Rare Diseases Framework launched

    New UK Rare Diseases Framework launched

    On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole?

  • Research Update - Professor Arlt's Perspective - 17/03/2020

    Research Update - Professor Arlt's Perspective - 17/03/2020

    In 2017, Weibke Arlt, a member of our Clinical Advisory Panel, published research about Addison's and natural killer cells. In recent weeks, it's gone viral in light of the COVID-19 outbreak. We asked her to give her perspectives on what that means for us. She kindly tweeted her responses yesterday.

  • Easing lockdown: How are you feeling? - 10/5/2020

    Easing lockdown: How are you feeling? - 10/5/2020

    It's important to remember you're not alone in experiencing a range of emotions after adapting to lockdown life.

  • [Superceded] EJE Guidance: Managing Adrenal Insufficiency in the time of COVID-19 - 21/04/2020

    [Superceded] EJE Guidance: Managing Adrenal Insufficiency in the time of COVID-19 - 21/04/2020

    the European Journal of Endocrinology (EJE) editoral board has commissioned a new guidance series for the management of endocrine conditions during COVID-19. Included within this is clinical guidance for the management of Addison's disease and adrenal insufficiency. Here we take a look at this vital new guidance, so you can get a clearer view of what this means for you or your loved ones.

  • Coronavirus Vaccines and Adrenal Insufficiency

    Coronavirus Vaccines and Adrenal Insufficiency

    Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.

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Research Grants

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more

Published: 22nd February, 2019

Updated: 19th February, 2021

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Copyright © Addison's Disease Self-Help Group Registered as Charity number 1179825

The information contained within this website is not intended to provide clinical diagnosis and/or personalised medical advice. It should not be treated as such. Always seek the advice of your doctor or a health care professional before starting any new treatment for your underlying condition. While we have taken every care to compile accurate information to reflect the current state of knowledge, we cannot guarantee its correctness and completeness. The information provided in this website does not constitute business, medical or other professional advice, and is subject to change. In no event will the Addison’s Disease Self-Help Group or any of the contributors be responsible or liable directly or indirectly, for damages or liabilities relating in any way to the use (or misuse) of information contained within or referred to in this website.