Trust formed for those with Guillain-Barre syndrome.

DO YOU know anyone who has had Guillain-Barre syndrome, chronic inflammatory demyelinating polyneuropathy or Miller Fisher syndrome? Or are you like 99.9 percent of people who have never heard of these illnesses?

Guillain-Barre syndrome (GBS) is a rare, paralysing illness affecting the peripheral nerves. There are about 80 cases each year in New Zealand. Some episodes are very minor but others are severe, with patients requiring full life support and a respirator for a period of time. However, GBS has a good prognosis in 95 percent of cases and a normal or close-to-normal lifestyle can be resumed once this episode is over.

Last year, the first conference on GBS was held in New Zealand, with 140 people with the disease attending. It was a fantastic weekend and we hope to repeat it in 2005.

We have now formed a charitable trust with Rotorua MP Steve Chadwick as our patron. Our ten-member board of trustees is made up of those who have suffered from the above illnesses, or the caregivers or family members of those who have been affected.

If you have had any of these illnesses, or know someone who has, please contact me at 27 Grenville Street, New Plymouth, ph/fax [phone] or email: [e-mail] for more information about the group and its efforts to reach all those affected by this rare illness.

Jenny Murray

National co-ordinator

GBS Support Group Trust

* See Understanding Residuals in Guillain-Barre syndrome on p16 of this issue.