New patient support group for Addison’s disease

Patients with a rare disorder of the adrenal glands can now get expert advice from a support group set up especially for them.

The Pennine Acute Hospital’s NHS Trust’s Addison group has been launched following a need to educate and support patients with the condition.

Addison’s disease, also known as primary adrenal insufficiency or hypoadrenalism, affects the production of two essential hormones called cortisol and aldosterone.

The adrenal glands are two small, pyramid-shaped glands that sit on top of the kidneys. Each gland has inner and outer layers, which have separate functions – the inner area (medulla) produces the hormone adrenaline and the outer layer (cortex) produces the hormones cortisol and aldosterone. In Addison’s disease, the adrenal cortex is damaged and not enough cortisol and aldosterone are produced.

Early stage symptoms of Addison’s disease are similar to other more common health conditions such as depression or flu, and patients may experience fatigue, muscle weakness, low mood, loss of appetite and unintentional weight loss and increased thirst. Over time these problems may become more severe and further symptoms such as dizziness, fainting, cramps and exhaustion may be experienced.

Karen Hallett, endocrine specialist nurse at the Trust, said: “I regularly see patients in clinics for steroid education across our four hospital sites. Some of these patients have Addison’s disease and they need advice and support in the management of their condition and what to do when they have ‘sick days. A number of patients had already told me that they had never met anyone else with the disease and so I realised that it would be of huge benefit to them to meet other people with the same condition so that they could share experiences, and we could also hold educational sessions.”

Over 40 people attended the first meeting which was organised in liaison with the national Addison’s Disease Self Help Group. Patients travelled from all over the north-west and listened to Dr Salah Kouta, consultant in diabetes and endocrinology who works at Rochdale Infirmary and Fairfield General Hospital, deliver a session explaining what the disease was, and answer patients’ questions and concerns. The group was praised by the patients who commented on the positive engagement that came from it.

Patient Julie Cullane said: “The meeting was a fantastic opportunity to learn more about our rare medical condition, refresh our knowledge on 'sick day rules' and the injection technique and, most importantly, to develop and strengthen relationships with the medical professionals outside of clinic time.”

About 8,400 people in the UK have Addison’s disease. It can affect people of any age, although it’s most common between the ages of 30 and 50. It is also more common in women than men.

Addison’s disease is treated with medication to replace the missing hormones which needs to be taken for the rest of the patient’s life. With treatment, symptoms of Addison’s disease can largely be controlled and most people with the condition live a normal, healthy life. However there is a risk of a sudden worsening of symptoms called an adrenal crisis. This can happen when the levels of cortisol in the body fall significantly. An adrenal crisis is a medical emergency and if left untreated, it can be fatal.