Explaining blindness to others has been identified as the biggest difficulty faced by people with Retinitis Pigmentosa (RP), according to research conducted at Anglia Ruskin University.
Published in the journal, PLOS ONE, the study involved a total of 166 people living with the inherited condition. Researchers asked participants how they deal with misunderstandings that occur as a result of their visual impairment, and how easily they are able to explain to others what they can and cannot see.
Rating these tasks, 39% of respondents said it was “impossible” or “very difficult,” with a further 27% rating them as “moderately difficult.”
RP is a condition which usually involves the loss of peripheral vision, so the ability to see fine detail with central vision is often unimpaired, but being able to move around safely can be difficult.
Speaking about the purpose of the study, Dr Keziah Latham (pictured), a reader in the Department of Vision and Hearing Sciences at Anglia Ruskin University and lead author on the paper, said: “We know a great deal about how visual impairment affects people carrying out everyday tasks, but less research has been carried out into the emotional impact.
“And until this study, we knew even less about RP, which affects a much younger group of people than other forms of blindness.”
Expanding on the study’s findings, Dr Latham said: ”We found that the biggest emotional problem faced by people with RP is communicating their vision loss to others. This is partly because explaining blindness is very difficult, but it is also made more difficult if other people do not have a good understanding of vision loss – perhaps thinking that blind means unable to see anything at all, or that only central vision is affected.”
The research was supported by the charity RP Fighting Blindness, which helped researchers recruit volunteers for the study.
Speaking about the study, chief executive at RP Fighting Blindness, Tina Houlihan, said: “We welcome these findings as the emotional aspects of living with a condition such as RP are often overlooked.
“We are aware that many members of the public have misconceptions about visual impairment and do not realise RP does not necessarily equate to full blindness.
“We have heard about the frustration felt by some members of our patient group due to the lack of knowledge the general public has about such matters.”