Retinitis Pigmentosa

[abbytibby]

I heard that it is a possibility to die from RP? is this true? Do you really lose your sight completely by age 40?

[curnean]

Hi, it is not possible to die from retinitis pigmentosa. It is a retinal dystrophy, which means that the cells in your retina (the back of your eyes) are affected. It will affect your sight but it will not kill you.

The rate of degeneration is different for every person - you will hear this from every specialist in the world. There is no way to predict how much sight you will lose by certain stages through your life. Some people will completely lose their sight by 40, but this is very very rare. Most sufferers have useable vision until quite late in life. There are a lot of RP sufferers who
die, old and happy, with some sight left. I'm sure that doesn't sound like much hope, but believe me, as you are losing your sight, you will learn to cherish what you have left, even if it isn't much compared to the sighted world.

I am 25 and have RP, I was diagnosed as legally blind at 18 (less that 14% but more than 2% useable vision left). At my last test about 2 years ago I was down to about 6-7% useable vision. This has only meant that my husband and I have needed to be creative in the way things are done (for example, I do most of the cooking so we have a good directional lamp on every bench in the kitchen or I use a coloured ping pong ball so I can see when liquid is close to the top of a glass - I was ALWAYS overfilling!). I still work full time and I also study part time, both in the finance industry. I anticipate that while my sight will continue to get worse, I will be able to continue living a full and productive life for a very long time to come.

Have hope and smile. Don't let it beat you, you are the only one who can allow this to happen. Good luck going forward into your future.