Living with Addison's disease: A guide for people with Addison's, supporters and professionals

Pearce, SHS; Spain, S

Living with Addison's disease: A guide for people with Addison's, supporters and professionals

Lookup NU author(s): Professor Simon Pearce ORCiD

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Abstract

Managing your Addison’s: an introduction Addison’s is a rare endocrine condition where the adrenal glands cease to function, so that your body no longer produces enough of certain essential hormones, known as steroid hormones. Fortunately, you can replace these essential hormones with daily steroid tablets. The hormones that your body no longer produces enough of are: -Cortisol, aldosterone and DHEA (for “primary adrenal insufficiency” or Addison’s disease) -Cortisol and DHEA (in the case of “secondary adrenal insufficiency”) Cortisol regulates appetite, blood sugar and food metabolism; aldosterone regulates sodium, fluid balance and blood pressure; DHEA influences body hair growth and libido (sex drive). 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. It is not unknown for people with Addison’s to live into their 90s. Perhaps the most famous person with Addison’s was US President John F Kennedy. It takes time to adjust to a diagnosis of a long-term condition and you may not have heard of Addison’s disease, prior to being diagnosed. Sometimes, owing to the non-specific nature of the symptoms (such as tiredness, dizziness, weight loss), the path to diagnosis is not straightforward. One study found that people with symptoms of Addison’s disease had seen an average of 3 different doctors before the correct diagnosis was made.1 After the diagnosis there can be a sense of relief, as well as uncertainty about what to expect in terms of living with the condition. This guide has been written to help you manage your condition day-to-day. It provides information on what to do when you experience illness or other situations requiring extra care or short-term adjustments in medication. We hope that it will help reassure and inform you on this journey, especially when you are newly diagnosed. We trust that it will also serve as a useful reference for you and your family members over the longer term. Because Addison’s disease is rare, not all healthcare providers will have heard of it, and few will have a lot of experience. This means that it is important for you to know as much as possible, yourself. Nevertheless, this publication can only give you general advice and it cannot be a substitute for your own medical team assessing your individual healthcare needs.