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Insights into rare disorder at NZ conference

Published: Thu 10 Mar 2011 12:50 PM
International expert to give medical insights into rare disorder at NZ conference
A world authority on Guillain-Barré Syndrome will headline a conference in the capital late April devoted to discussion around the rare disorder and its related neuropathies.
"Understanding Guillain-Barré Syndrome and CIDP" is the fifth national conference organised by the Guillain-Barré Syndrome Support Group of New Zealand. It will be held from 29 April to 1 May 2011 at the Brentwood Hotel in Kilbirnie, Wellington. The biennial conference is for people with Guillain-Barré Syndrome (GBS) and its variants such as Miller-Fisher Syndrome, acute motor axonal neuropathy (AMAN) and others as well as patients with chronic disorders such as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and related disorders.
GBS is a rare autoimmune disorder, where the body's own immune system turns on itself and attacks the peripheral nervous system causing temporary muscle weakness, sometimes to the point of severe paralysis, sensory loss and pain. Often triggered by a preceding illness, GBS has an incidence of 1-2 people per 100,000 or about 40-80 New Zealanders a year. CIDP is a chronic or ongoing neuropathy that closely resembles GBS. Professor Gareth Parry, Medical Director of the Clinical Neuroscience Research Unit at the University of Minnesota who has studied GBS and its variants for the best part of four decades, will give two keynote presentations at the conference.
One talk will be an overview on pain and fatigue in GBS. "These are very common but much under-appreciated features of GBS and CDIP," says Professor Parry, who will also touch on a potential new treatment for fatigue his research team hope to study soon. In his other talk he will explain more about what inflammatory (autoimmune) neuropathies are and discuss some specific examples that have been come to attention in recent years. These include paraproteinemic neuropathies and multifocal motor neuropathy (MMN), which Professor Parry himself can lay claim to discovering and is actually called Parry's syndrome in some parts of the world. Professor Parry will also review experimental treatments for these disorders.
Professor Parry is a New Zealander whose trip to the United States in the 1970s to study "for a couple of years" turned into a 30-plus year career there. "I arrived in the US at a the time of the 1976 swine flu vaccination program that caused a mini-epidemic of GBS and was at the heart of some of that research, which got me interested in the area." Professor Parry has written two books on GBS, one for neurologists and one for patients.
He is GBS NZ support group's medical advisor and is on the medical advisory board of the GBS/CIDP Foundation International. His longstanding interest in finding more effective and safe treatments for CIDP sees him currently collaborating on a study of subcutaneous immunoglobulin administration to treat CIDP and MMN. He also hopes to get a project started on the use of a new drug - dalfampridine - that could potentially improve function in GBS patients who have not completely recovered, particularly those with fairly good strength but persistent fatigue.
The drug has been proven to improve physiological function in nerves in multiple sclerosis and Professor Parry believes it should have a similar benefit in GBS. The 2011 GBS/CIDP conference is open to current and former GBS/CIDP patients, and their families and caregivers. It will also appeal to neurologists, physiotherapists, occupational therapists, nurses and general practitioners.
The conference, which will be officially opened by Labour MP Steve Chadwick, Patron of GBS New Zealand, includes a keynote presentation on patient's rights by Professor Ron Paterson, professor of health law and policy at the University of Auckland and former Health and Disability Commissioner (2000-2010). There will also be presentations by former patients, an experts' forum with Q & A time and group discussion sessions. For more information or to register visit the GBS NZ Support Group's website at www.gbsnz.org.nz .
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