The majority of the text contained in this booklet has been taken from a publication issued by the Guillain-Barré Syndrome Support Group of the United Kingdom written by Eileen Evers with the help of Professor Richard Hughes and other medical and support staff at Guy's Hospital, London.
THE GBS Association wishes to thank the Guillain-Barré Syndrome Support Group of the United Kingdom for the use of their material. This Australian version has been compiled with the assistance of Professor Graeme Stewart, Director of the Department of Clinical Immunology, Westmead Hospital, NSW. The help of Professor Stewart is gratefully acknowledged.
The GBS Association urgently needs Sponsors for future re-prints of this booklet. This space is reserved for their details.
This booklet has been written for patients who have been told that they may have CIDP (chronic inflammatory demyelinating polyradiculoneuropathy), and for their relatives and friends. It aims to explain accurately and honestly what CIDP is, and hopefully will answer some of the questions you may have. If you do not understand or are worried by any of the information offered here, do ask your doctor to explain.
The degree of severity of CIDP and the way it effects people vary enormously from one person to another. There is no typical CIDP; therefore one general description and one certain prognosis are not possible. This booklet describes the common symptoms.
What is CIDP?
CIDP is defined thus:
- 'chronic' refers to the gradual course of the illness, often over a long period of time;
- 'inflammatory' means there is strong evidence that it is inflammation that causes the nerve damage;
- 'demyelinating' means that the damage is primarily to the insulating myelin sheaths around the nerve fibres and
- 'polyradiculoneuropathy'; 'poly' means many, 'radiculo' means root, 'neuro' means nerve and 'opathy' means disease; so 'polyradiculoneuropathy' means a disease of many peripheral nerves and their roots (which are the points of origin of the peripheral nerves from the spinal cord). The central nervous system is the brain and spinal cord and the role of the peripheral nerves is to bring in and take out the messages from the central nervous system to all parts of the body. CIDP is a very rare disease of the peripheral nervous system involving gradual development of weakness and loss of sensation, predominantly in the arms and legs.
The incidence (the number of new cases each year) and prevalence (the total of all people affected at one time) of CIDP are very difficult to determine because of its rarity. The incidence of CIDP is estimated to be between 12 and 15 per year whilst the prevalence is approximately 600 sufferers in any one year in Australia. The incidence of Guillain-Barré Syndrome (GBS) is estimated at 340 per year with a similar amount of prevalence.
The disease may start at any age, but is slightly more common in young adults. It is more common in men than women. For women, relapses are slightly more likely to occur during a pregnancy year. It is not hereditary; ie it is not passed on to children. It is not infectious; meaning it is not caught from, or transmitted to, anybody else. It is not a psychiatric or 'nervous' disorder.
No one is sure what causes CIDP. Current research is investigating the role of preceding infections, immunisations and other events before the onset or relapses of CIDP. To date there is no general agreement on what causes the disease, however it is known that the immune system attacks the nerves but it is not known why.
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