About the RP Journey

Being diagnosed with retinitis pigmentosa (RP) is the start of a potentially traumatic journey and you will need lots of support. You will have many questions right from the start and again every time something changes. There will be questions about your eyes, about coping with sight loss, about your family, your work, and so much more.

The journey is not one you will have to make alone. There is support and information out there – in times of real need or for your simple questions. Here we will help you to:

  • know what you can expect from your ophthalmologist and other health professionals
  • understand what support is available from other agencies
  • think about the steps you might need to take – when you are ready
  • know where to turn to at any time for information and support
  • understand what is happening to your eyesight and why
  • be able to answer questions from your family and friends
  • know what information you can trust

For most people, the need for information, understanding, support and practical help will start at the meeting with your consultant where a diagnosis of RP is confirmed. However, the journey might begin earlier – perhaps there is a history of retinitis pigmentosa in your family, or maybe you have discussed symptoms with your optician, or possibly you have simply been researching symptoms on the internet and think you need to know more about RP.

We believe and hope the pathway will help your health and social care professionals deliver the services you need, and will help you understand what to expect and what you are entitled to ask for.

For more information or to look at the pathway, browse this site from the menus at the top of the page, or simply click through using ” >>NEXT ” on each page.

Please let us know if there is anything that is missing and that you feel should be included. RP Fighting Blindness maintain this website and you can contact the office at any time on 01280 821334.

>> NEXT (What’s RP)