Retinitis pigmentosa is a group of genetic conditions that cause progressive loss of vision. This is because RP results in the degeneration of cells in the retina, the lining at the back of the eye. You can learn more about this on the What’s RP? page of this site.
RP is often diagnosed as a result of loss of night vision, loss of peripheral vision, concerns about clumsiness in a child, or because it is known already within a family. It can be diagnosed at any age and the level and speed of sight loss vary enormously.
Other terms you might hear include night blindness, tunnel vision, rod-cone dystrophy, cone-rod dystrophy and retinal dystrophy, as well as some specifically named types of RP such as Usher’s Syndrome which results in both hearing and sight loss. RP affects both sexes, all races (though is more prevalent in some Asian groups), and all ages. RP is one of the largest causes of sight loss in both children and people of working age.
Being a progressive condition it brings ongoing problems for your student. He or she is faced with a continually worsening condition and at present there is no treatment.
Depending on the level of sight loss your student is likely to have a Statement of Educational Needs (SEN). However, as well as referring to your SEN specialist at your school for advice and support, you should be aware of the potential need for other practical, emotional and social support. You will need to work with your student to work out the best way to help on an individual basis, as well as taking the simple practical steps outlined on the next page.
Your school SEN specialist and your Local Education Authority are the key sources of advice. There is also more detailed background information about how young people respond to the prospect of progressive sight loss on these pages of the RP Fighting Blindness website as well as this guidance on educational support.
In addition, you can contact the RP Helpline. Calls are taken by volunteers with RP or with a family member with RP, and they will be able to answer any question about practical support you can provide to your student.