MORE than a dozen people who suffer from a rare neurological condition met in York this week.

Primary Orthostatic Tremor is a progressive, degenerative neurological condition which can manifest itself by leaving sufferers able to walk, but unable to stand for any period of time.

There are only thought to be about 50 people in the UK diagnosed with the condition, and a meeting was held at Hotel 53 on Wednesday where a number of sufferers got together for the first time to discuss how they cope with the condition, and offer support to each other.

Jean and John Kidney organised the event after money was granted to the National Tremor Foundation by the George Albert Moore Foundation, with the stipulation the meeting be held in Yorkshire to help sufferers get together.

She said: “We don’t have very much support at all. There are 15 people in this room with orthostatic tremor and I think it’s the only place in the world where you get so many people with that condition in one place.”

Rosemary Ilyas travelled to York from Fulham for the meeting, and said it was good to meet people who knew about the rare condition.

She said: “It’s very difficult socially. Trying to explain this condition to people is very, very difficult. They can never fully understand, and that is not surprising when you consider that there’s hardly any doctor who understands this situation too. It’s so rare.

“Standing is impossible. It gets worse gradually, initially it wasn’t too bad but it gradually got worse and worse and then it becomes the sort of situation where you can’t stand for more than a second or two and then you have to sit down.”

Beverley Spicer who travelled to York from Bodmin said the group had “hopes and dreams about trying to find a cure for this condition”, but in the meantime, the support offered by the group was important to sufferers.

She said: “It’s a very, very rare condition, there are so few people who have it and we need to be able to find each other and to meet and talk.

“It’s a very small group, and it’s a very rare condition, and we need to talk about our condition because there are so few of us. We like to share about the things we can do or find very difficult, the types of equipment we have and problems we have, and most of all we try to share some of the difficulties and ups and downs we have.”

Details about the condition are at