Addison’s disease

Addison’s disease, also known as primary adrenal insufficiency or hypoadrenalism, is a rare condition where the adrenal glands cease to function. Addison’s disease, first described in 1849 by Dr T Addison, is a rare condition which is due to the destruction of the adrenal cortex leading to a deficiency or absence of cortisol and other adrenal hormones. The adrenal glands are two small glands that sit on top of the kidneys. The adrenal gland is damaged in Addison’s disease, so it does not produce enough of certain essential steroid hormones: cortisol or aldosterone. These are critical for life and are also responsible for the rate at which sugar is made available to the tissues of the body, and the amount of salt lost from the body. Lifelong, daily steroid medication is essential.

In this article

What are the symptoms of Addison’s disease?

The symptoms of chronic adrenal failure have a very gradual onset, so that the condition is difficult to appreciate. Lack of energy, malaise (a feeling of general discomfort or uneasiness), or giddiness when standing up, are almost always present. There is usually an increase in skin pigmentation. Often, the development of an intercurrent illness decompensates the condition which suddenly deteriorates into circulatory collapse, hypoglycaemia (low blood sugar) and, if untreated, death.

What are the causes of Addison’s disease?

The deficiency may have a number of causes, such as auto-immunity, tuberculosis, or it may be spontaneous.

How is Addison’s disease treated?

The condition, once diagnosed, can be successfully treated with replacement hormones. Extra steroid hormones will be necessary to cover periods of intercurrent illnesses and surgical stress.

Inheritance patterns and prenatal diagnosis

Inheritance patterns
The condition may occasionally be genetic, for example, there is an X-linked form of the disease, which is related to adrenoleukodystrophy.

Prenatal diagnosis
None.

Is there support for people affected by Addison’s disease and their families?

If your child is affected by a medical condition or disability, we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. We also offer emotional support for parents via our Listening Ear service.

We have a range of parent guides on aspects of caring for a disabled child in our resource library. You may also find our Early Years Support useful, which contains links to parent carer workshops and help for families going through the diagnosis process.

We’ve listed some support groups below and you can also meet other parents online in our closed Facebook group.

Addison’s Disease Self Help Group (ADSHG)

Email: enquiries@addisons.org.uk
Website: www.addisonsdisease.org.uk

The Addison’s Disease Self Help Group (ADSHG) is a Registered Charity in England and Wales No.1179825 . ADSHG is the UK and Ireland charity working to improve the lives of people with Addison’s disease, adrenal insufficiency and all who support them. Addison’s is a rare disease affecting adrenal gland function and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 – 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.  Life-long treatment with replacement steroid hormones is required and if untreated is fatal. Medication is usually taken several times daily at carefully timed intervals and individuals must also know how to administer an emergency hydrocortisone injection to prevent a potentially fatal adrenal crisis. 

The ADSHG is here to support the Addison’s community and their healthcare providers to promote better medical understanding of this rare condition, campaign for and support everyone affected by adrenal failure, and fund vital research. 

Founded in 1984 by Deana Kenward shortly after her own diagnosis, the ADSHG now works in co-operation with some of the UK’s leading adrenal specialists to promote broader medical understanding and effective management of this rare condition.  They also have a dedicated section on their website for children and young adults.

Group details last updated May 2023.

Credits

Medical text written August 2010 by Dr R Stanhope, Consultant Paediatric Endocrinologist, The Portland Hospital, London, UK. Last updated June 2023 by The Addison’s Disease Self Help Group (ADSHG), UK.