Researchers want to hear from people with restricted growth to see if they need help. Health Editor Barry Nelson finds out why.

JOHN Wallace is an ambitious, self-employed landscape gardener with a thriving business in the North-East. In just four years, John, who is still only 24, has established a good reputation and built up a loyal clientele of customers. But when he turns up on a customer's doorstep, it can be quite a surprise because he is just four feet six and three-quarter inches tall.

The diminutive, green-fingered young Geordie is one of up to 6,000 people in the UK who have one of 200 different genetic conditions which cause restricted growth. Most have achondroplasia, the commonest form of dwarfism, which is associated with short limbs, small trunks and out-of-proportion heads.

In John's case, he was born with a condition called Spondylo Epiphyseal Dysplasia, or SED, which means that his body, head and limbs are smaller than usual but more-or-less in proportion. He says it was quite a shock when specialists told his parents that their son had a restricted growth disorder.

"I come from a family of tall people, everyone in my family is tall," says John. "When I was born there was no explanation why it happened. My parents did quite a lot of research to find out why but they still found it difficult to understand."

His parents were very supportive and determined to help him as much as they could. Schooldays can sometimes be a trial for people with growth disorders and bullying can be a problem. But John seems to have sailed through them without experiencing serious difficulties at the hands of other pupils. "When I was growing up I just looked as if I was a particularly small child. Even when I got older I was never bullied," he recalls.

In his teens, John developed an interest in gardening and he followed this up by attending a specialist horticultural college. When fully qualified, he applied successfully for a business loan from the Prince's Trust. Four years on, he is established and successful and looking to take on his first employee.

"I've got so much work I really could do with some help," says John.

In general, he says that the vast majority of people he has encountered in his life have been perfectly OK about his vertically challenged status.

"Looking back, most of the people I have come into contact with were all right with me. I suppose the condition I have does help because people just think I am quite small."

However, not everyone holds back when they see someone who looks unusual passing by. "I do occasionally get problems if I go into Newcastle or go out drinking but that is just expected... that is life," he says.

John takes a philosophical approach to living with restricted growth.

"I never go out with a negative view or a chip on my shoulder. The best thing you can do is to be nice to people and people are generally nice back to you."

This laid-back approach is probably why John has agreed to speak to North-East journalists in a bid to draw attention to a unique piece of research. He is backing efforts to reach out to the hundreds of people with restricted growth who are believed to live in the North-East.

People will be asked to fill in a detailed questionnaire about their social experience and health and a sample will be asked to take part in interviews.

The study, supported by The Big Lottery Fund, is the first to try to put together hard information about the health and social conditions experienced by people with restricted growth. Appropriately, one of the two chief investigators, sociologist Dr Tom Shakespeare, has achondroplasia, the commonest form of dwarfism, himself.

"No-one really knows how people of restricted growth are doing. We are working with the Restricted Growth Association but it has less than 1,000 members across the UK and we think there may be up to 6,000 people of restricted growth out there," says Dr Shakespeare, who will be working with geneticist Dr Mike Wright on the study.

"It is true that having restricted growth isn't a barrier to doing pretty much whatever you like, within reason. People don't die early, they don't have major intellectual problems," he says.

"However, it is true that people with restricted growth do experience increasing pain and mobility problems as they get older. They also experience a lot of stigma and prejudice in everyday life. People get stared at all the time and in certain situations, they get mocked very badly. This can sometimes be really damaging."

Dr Shakespeare, 38, knows of at least one North-East family who had to move house to a more rural area because their restricted growth child was badly bullied at school.

"What we are interested in is finding out whether people of restricted growth are achieving their potential, getting equal opportunities, or are they stuck in dead end jobs or on the dole because employers won't give them a chance," he says.

Dr Shakespeare acknowledges that in the wider world, there are many examples of successful people with restricted growth and things have dramatically improved.

"Years ago it was either the circus, pantomime or the dole; now it doesn't matter that much what you look like," he says.

But he also believes there are many people out there who have not fared as well as they could have because they have lacked confidence or faced rejection.

"This project is designed to document what is actually happening and the only way we can do this is to find people who will take part," he says.

A confident, assertive, middle-class professional whose father was a doctor with the same condition, Dr Shakespeare has coped well with his disability. But he wonders whether the same is true of people who come from different backgrounds.

"I have had every chance in life but what if I had been the only person of restricted growth in the family? What if I had been living on a sink estate, nobody understood me and the people at school bullied me?"

One of the most important aspects of the research is to find out whether restricted growth people would benefit from any specific help.

"We want to know what people need. Maybe it is a bit of training and support, maybe it's some sheltered employment to get them started, maybe they need help to get to college or university, I don't know. Nobody knows because nobody has asked," says Dr Shakespeare.

John is aware that he has probably been fortunate compared with other people with restricted growth. He even acknowledges that in some cases, his short stature has been an asset.

"I am close to the ground and a lot of the work in horticulture, especially landscaping, is on ground level. If I am weeding, I don't have to bend," he laughs.

"Spades are generally too small for taller people and they have to bend down to use them. I don't have that problem."

John hopes as many people as possible respond to the study. "I reckon I have been really lucky but I think there are probably a lot of people out there in a similar situation who have had a hard time. If this study helps them, then that will be brilliant," he says.

* For further information, contact Sue Thompson on (0114) 2356904, email sue.thompson@ncl.ac.uk or write to PEALS, Newcastle University, Freepost NAT6133, Newcastle NE1 4BR.

Alternatively, call Dr Tom Shakespeare on 0191-241 8650.