Date Published: 8 May 2007

Adults with dwarfism more disabled by social barriers and medical problems than previously realised

Adults with restricted growth, or dwarfism, are far more disabled by social barriers and by medical problems than has previously been realised, according to a report published today.

A team of researchers at Newcastle University, led by sociologist Dr Tom Shakespeare and geneticist Dr Michael Wright, conducted the three-year study, which was managed by the Restricted Growth Association. The study is the largest research project of its kind to have been carried out into the quality of life of adults affected by conditions that cause restricted growth.

Restricted Growth affects approximately one in 10,000 births each year. Some 75% of individuals born with restricted growth conditions are born to two parents of average height.

One of the key findings of the study was that almost all restricted growth people suffer unwanted public attention. 97% of respondents said they have experienced name calling, while others cited problems with abuse including mockery, and sometimes even physical violence.

" In this day and age, this is quite an alarming statistic ", said Dr Shakespeare, who himself has achondroplasia, the commonest form of dwarfism.

" High levels of abuse can damage an individual's self esteem, cause unhappiness and even clinical depression, and can actually deter them from going out in public."

" While most restricted growth people prefer to think of themselves as different, rather than disabled, and mainly lead normal lives, the reality is that society tends to underestimate the health and social disadvantages arising from restricted growth, particularly for older people ", he added.

The study also found that restricted growth people are significantly disadvantaged in many areas of public life. They are less likely to get married, and twice as likely to live alone as people of more normal stature.

Although 78% of the respondents in the study's sample had educational qualifications which were at least as good as national averages, findings showed that they were more likely to be in lower occupational roles.

Many respondents also felt that their employment prospects had been influenced by their condition – they had been discouraged from becoming teachers or nurses, excluded from training or kept out of roles dealing with the general public. Several reported direct discrimination, for example being paid less than a colleague for an equivalent job, and denied opportunities for promotion.

The study also revealed that people with restricted growth suffer from a much higher degree of pain and physical restriction that has been previously assumed.

" We have found that these symptoms occur at a much earlier point in life than we ever realised before ", said Dr Michael Wright.

" More than half of the respondents had experienced pain symptoms before their 30s."

People with restricted growth experience a range of medical complications throughout their lives, including joint pain, spinal problems and obstructive sleep apnoea. 39% of respondents had seen an orthopaedic surgeon, but others found that their GPs had limited knowledge of their medical conditions, and finding an experienced specialist to treat problems like pain and mobility problems can be difficult in many parts of the country.

Dr Shakespeare added:

" Our study has shown that there is urgent need for action to remedy these problems. At the most basic level, we would like to see young people in schools made more aware of the distress caused by staring and bullying people who have restricted growth or other physical differences.

_ Benefit and blue badge regulations should be reviewed to take the into account the needs of people with restricted growth, and we would like the NHS to provide better information and medical provision ", he said.

 

Source: Newcastle University (England, UK).

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