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Welcome to the Addison's Disease Network

Our aim is to offer information on Addison's Disease, and non-clinical advice either privately or via a discussion group (see our 'Contact us' page for both) to all who suffer from this rare disease.
Although a severe medical illness, Addison's disease can be controlled with the right medication and when well controlled, patients can usually expect to survive for a normal lifespan. The disease does have its ups and downs, but on this web site, we will attempt to allay some of the fears caused primarily by lack of knowledge.

Please look through the menu. On the first page is an article explaining the 'ins and outs' of Addison's disease, by a retired Chief Biomedical Scientist who has had the condition himself for a number of years.
The article outlines the background of the disease, from publication of the first paper by Dr. Thomas Addison in 1849, and deals with the symptoms including those associated with Addisonian crisis; how steroid treatment and Addison's are balanced; the various causes of the condition, and ends with how Addison's disease may be diagnosed and treated.

This is followed by a historical article about Dr. Thomas Addison himself, the physician who first discovered the cause of the disease named after him. Without people like Dr. Addison, many of us would not survive, let alone live a relatively normal life albeit on permanent medication.

We have then provided an Addison's information page with articles written by two patients, both of whom have spent years working in the UK's National Health Service (NHS) and who both have a good insight to how AD affects patients. The articles are written from different viewpoints and aim to give the reader ideas on how this insidious disease affects life.
A link from this page provides the reader with information on what laboratory tests are used to test for and monitor Addison's disease.

An autoimmune process can occur in the body when atypical antibodies are produced against various individual specific body tissues.
Around 70% of cases of Addison's are now proven to be autoimmune in nature and in the case of AD most antibodies are against the adrenal glands which sit one above each kidney. However by the time around 90% of the adrenal cortex has stopped working (atrophied) and symptoms of the disease finally show themselves, these adrenal antibodies may have already disappeared. In the next page we reproduce a medical article where the writer describes in some detail what this autoimmune process entails.

Many articles have been published on this intriguing condition and most, if not all, include a list of the various signs and symptoms of the disease. However it appears that little or no work had been done on their frequency within the population, nor incidence rate for each symptom which varies from patient to patient.
In order to attempt to rectify this we carried out an Addison's Disease Signs & Symptoms survey in the form of a questionnaire over a period in excess of 2 years.
On the next page you will find an analysis of the results which have been extracted from all the survey forms we received (101 in total from around the world). When published this was the largest and most detailed survey on the subject ever carried out. Now in 2008 we believe this to still be the case.
This is followed by a 'short form' extraction of the survey report in which we have listed all the individual signs & symptoms of this disease, together with the percentage incidence rates of each, both before and after start of treatment. This form can be used by patients who wish to retain a reference of their own symptoms throughout the progress of their disease by 'ticking' each relevant symptom and printing out the sheet. It is also useful for providing their own doctor with a written record of their symptoms at a given time, rather than as is normal with many AD patients forgetting half the things you wanted to mention to him or her; (this in itself is a good example of how we find our lives affected, as word finding problems and short term memory loss are common in Addison's patients.)
We also strongly advocate including a dated copy of this completed form with any applications patients may make for Social Security (SS) disability benefits (US) or Department of Work & Pensions (DWP) disability benefits or allowances (UK). Remember though it is always essential you keep a dated copy in your files for future reference.

  • N.B.:- We have seen written evidence of a case in 2008 here in UK where in granting an application for Disability Living Allowance (DLA), the DWP made reference to this symptoms list which an Addison's patient included with her application as being "the most suitable available" and which assisted them to "decide how much help" she needed.

Without prompt medical treatment, a proportion of patients with Addison's disease may not survive even one Addisonian crisis. With the knowledge of what a crisis is, how to recognise it and deal with it promptly, Addison's patients and their loved ones and carers can identify a crisis before it becomes life threatening, and help save a life. The 'Addison's Crisis' page provides guidance on how to do this.
It also includes a 'printer friendly' copy of the 'Addison's Disease Crisis Letter' which all patients with this condition are urged to ask their Doctor to fill in; the patient should carry it with them at all times. This will help the emergency services to identify the carrier of the form as being a patient suffering from Addison's Disease, on long term steroid therapy, and provides guidance on how the patient needs to be treated.

Whilst we cannot give clinical advice, we do include an aide memoire on how patients and carers are taught to give the emergency life-saving injections if or when they are caught in an impending or established Addison's crisis.

We then provide two pages dealing with the drugs routinely used to treat Addison's disease, the latest being dealt with separately as it provides up to date information on a new formulation of fludrocortisone used in parts of the world and its specific storage requirements.

The next few pages attempt to give the reader a) an insight via a series of case histories, of how Addison's affects patients and their day-to-day life, b) several further case histories on the less common causes of AD, and c) a theory by the writer of this home page on a further as yet not proven cause of Addison's disease.

To complete the picture we have included a glossary of the medical terms used in conjunction with Addison's disease, a Frequently Asked Questions page (FAQ), and a sad article on a Coroner's inquest into the death of a young boy from AD. (We stress that this is the rarest sort of outcome to Addison's disease and almost always only affects occasional undiagnosed cases.)

We welcome articles on your experience of Addison's Disease, which we will consider for future publication on this web site.
Details of how to do this are included in the 'About us & Contact us' page at the end of this site.

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Copyright © 2004-2009 Mike Welch

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The Genealogist - UK census, BMDs and more online
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"I have taken an annual subscription to "The Genealogist" for my own
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