Your first visit to the eye clinic or eye hospital will be daunting, and you may feel anxious. Later, more routine visits should feel more comfortable as you will have come to know what to expect, but even then, learning of further sight loss or a poor prognosis can be upsetting.
It is very important to take a family member or trusted friend to the appointment with you. You will have questions afterwards and it can be an enormous help to have had someone there listening to what was said and to help you understand it. Also, tests and eye drops may leave you unable to drive, so having someone to take you there and back is advisable.
Moorfields Eye Hospital in London is the best known of our eye hospitals and there are some excellent consultants based there. However the same can be said for many other centres; excellent consultants, facilities and modern equipment for testing are now available at all the major eye hospitals.
On the internet there is lots of information about the testing involved for RP, about questions you might ask at the hospital, and about the next steps. These three links are a good starting point:
- RP Fighting Blindness (main website)
- Moorfields Eye hospital, London
- Royal National Institute of Blind People (RNIB)
If you are diagnosed with RP, there will emerge from the first appointment a whole host of questions and actions you should take. However you should take a little time to let it sink in, to think about your next steps, take advice, learn more about RP, and not to make any knee-jerk reactions.
You will have plenty of time to sort out things like your employment, education, finances, family concerns and so on. Retinitis pigmentosa is, in the majority of cases, a slowly progressive condition and when newly diagnosed most patients will still have years of useful vision remaining, even if having to adapt lifestyle along the way.
The rest of this RP Pathway site will help you think about all of these things.