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Newly-diagnosed?


When you are first diagnosed with Addison's, it can be an uncertain and confusing time. You will have many questions and there is a lot of new information for you to digest while coming to terms with your diagnosis. This page lists some key actions that people who are newly-diagnosed with adrenal insufficiency can take to make sure that both they and their families and healthcare providers understand their condition and can manage their health going forwards.

 

 

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Join the ADSHG
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 the ADSHG, you gain access to the many forms of support that our Group provides including our online discussion forum, where you can chat with other people who have been in your situation and know exactly how it feels. Our online forum community is helpful and welcoming to new joiners and is open 24 hours a day, whether you want to ask a question or just have a chat about life. Our forum members take time to respond to every question asked and the in-depth responses from people who have lived with Addison’s for a while are much valued.

 

In your ADSHG membership welcome pack, you will also receive a copy of our crisis guidelines and emergency wallet card, which both of contain very helpful information. Additionally, you’ll be able to attend our social and medical meetings and receive our quarterly newsletter.

 

 
Read up
Addison’s disease and adrenal insufficiency are lifelong conditions that require daily medication. This means that you will need to learn how to manage your Addison’s yourself from day-to-day between medical appointments. Being well-informed will not only help you to look after your health but will also make you feel more confident and in control.

 

A good place to start is to read our ‘Managing your Addison’s’ leaflet which contains a summary of the key points that everyone with Addison's needs to know to manage their health. When you feel ready, we have a number of additional publications on our website which cover different aspects of living with Addison’s.

 

 
Visit your GP
As Addison’s is a rare condition, your GP may never have treated a patient with this before. This means that often you will know more about your condition than your GP does and you will need to work together on your medical care. Download and print out copies of our two information leaflets aimed at GPs – ‘Diagnosing Addison’s: a guide for GPs’ and ‘Caring for the UK Addison’s patient: information for GPs’ (we also have a separate version of this leaflet for those who live in Ireland). Take these leaflets with you to your appointment to give them to your GP to read.

 

Your GP can be a great ally in helping you to manage your Addison’s and it’s important that you work together to achieve this.

 

 
Adrenal crisis be prepared
An adrenal crisis occurs in people with Addison’s when the cortisol present in their body is not sufficient to keep it functioning. Common triggers include vomiting, diarrhoea, other infections (eg flu) or extreme emotional stress. An adrenal crisis is a life-threatening situation and requires immediate medical treatment with an emergency injection of hydrocortisone.

 

After diagnosis, you should be issued with an emergency injection kit which contains vials of hydrocortisone that either you or a friend or family member can administer if you are vomiting and unable to absorb oral tablets, or showing other signs of severe illness. These kits are usually prescribed by your endocrinologist or GP. If you are not offered one, you should ask your GP for this.

 

In our online shop, we also sell emergency injection boxes (minus the drug preparations which your GP needs to prescribe). These come with photo instructions on how to give the injection and allow you to keep all the materials needed to give the injection in the same place.

 

Once you have your kit, both you and people that you spend a lot of time with, such as family or friends, should learn what to do if you have an adrenal crisis and how to give an emergency injection of hydrocortisone. Learning how to do this is very important. It doesn’t take very long and it could save your life. You can read more about the symptoms of adrenal crisis and what you should do in the emergencies & hospitalisation section of our website. We also have a number of videos in our video hub discussing when and how to give an emergency injection.

 

 
Get red-flagged
For UK residents, it is important to register your Addison’s or adrenal insufficiency with your local ambulance trust to ensure that any call you make to them is treated as a priority and that the first responder carries the injectable drugs you need and is trained to give the injection in case of adrenal crisis. The ADSHG newsletter regularly publishes articles explaining ambulance trust registration processes and you can browse back issues within the website publications centre (members only).

 

Different ambulance trusts have different methods for registering steroid-dependent patients. You can look up the contact details for English ambulance trusts on the NHS Choices website. Northern Ireland and Wales have their own websites. If you live within the London Ambulance area, you do not need to register as all London first response vehicles carry emergency hydrocortisone injections and are trained in how to give these. Within the Republic of Ireland, all ambulances now carry injectable hydrocortisone; home address registration is not offered.

 

If you live in Scotland, your GP must compete an Emergency Care Summary on your behalf to be attached to your CHI records.

 

 
Talk to your endocrinologist
When you are diagnosed with Addison’s, within the UK and Ireland it is expected that your GP will refer you to the care of an endocrinologist (a doctor who looks after people with hormone-related conditions). You are likely to have lots of questions about your condition that your endocrinologist will do their best to answer, and it’s important that you try to learn as much as possible about how to manage your condition day to day. However, during consultations, it can sometimes be difficult to remember all the things you want to ask. Some people find it useful to write a list of questions to take with them while others like to have a friend or family member accompany them to ask questions.

 

Many endocrine units have endocrine specialist nurses who can be an excellent source of information and support. Find out if your hospital has an endocrine specialist nurse and if you can be put in touch with them. You may wish to ask your GP to arrange for you to be referred to one of the endocrine centres in your region that can offer specialist endocrine nurse support.

 

 
Medical ID
There are a number of companies that offer different forms of medical ID or jewellery designed to alert medics to your medical condition in case of emergency. These come in lots of different designs, so there is something to suit everyone. It’s advisable to choose a design that is easily identifiable as being a medical alert item. The ADSHG shop also sells steroid alert wristbands.

 

 

 

 

Be kind to yourself
Each person’s experience of being diagnosed with Addison’s is different; it can be a stressful and confusing time both for the person diagnosed and those close to them. Try to look after yourself and give yourself time to digest the information about your diagnosis. The ADSHG online forum can be a reassuring place to share your concerns and questions with others. Addison’s is a life-long condition, but with the right balance of daily medication, people with Addison’s can expect to have a normal life span and to lead full and productive lives.




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Contacts

 

Addison's Disease Self-Help Group

PO Box 1083

GUILDFORD

GU1 9HX

United Kingdom