Update......My family's experience. (My Experience of Retinitis Pigmentosa)

Member Name: Trixi

Product:	My Experience of Retinitis Pigmentosa
Date:	03/03/01 (80 review reads)
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Advantages: none

Disadvantages: loss of sight

What is Retinitis Pigmentosa (R.P.)

Retinitis Pigmentosa is the term given to a variety of disorders which affect the Retina. People can be affected in different ways, for some it can be the central vision, some the peripheral vision. I am told that it looks rather like a spider's web in the eye. Hence, various "blind spots" occur. This is a disease that gradually reduces the vision over time. At present there is no cure.

I am told that the symptoms tend to become apparent between birth and 30. My sister was diagnosed with Retinitis Pigmentosa (tunnel vision) at the age of seven - I was 4 at the time. Obviously I can't really remember much at the time, but I was tested as well, since the most common cases are hereditary.

This was some 25 years ago and the disease was quite rare. Infact I recall some tabloid getting hold of the story and I was not allowed out to play with my sister because a man with a camera was outside.

At the time of diagnosis, my parents were told that their daughter would probably be registered blind by 13 and that she would probably have to go to a special school. I can't imagine how that must have been.

My parents then found that there was experimental treatment in Switzerland that MAY help. This was an expensive treatment, but well worth a go. This involved my mum and sister spending 3 weeks of the summer holidays abroad, getting treatment. (My dad and I would remain in Britain - quite often there would be no family holiday.)
The treatment involved getting injections in the back of the eye everyday and every other year implants.

One year we made a family event of going to Switzerland when I was 7. Everyday we would go to the hospital. I only went inside once - all I remember is that it was white walled, smelt of disinfectant and I heard my sister screaming from the room at the end of the corridor.

The doctors got it wrong my sister is still not register
ed blind and she was in a mainstream school went to college. Her sight has got worse. She has difficulty at dusk/night and in dim lighting.

Anyway most of my life I have had regular checks, after a while the doctor said that there was no need to see me. A few months ago however, I was told that it appears as if I too have a form of the disease. After further checks, I have now been told that it looks all clear for now. I will remain getting checks however.

I don't mind telling you how relieved I was, afterall the thought that your sight will deminish is not a pleasant thought.....
Six months on ... I thought it was all over and I went back to the consultant last week...

There is a possiblity I may have a variant form of the disease now but at present the doctors just don't know. My sight in my right eye seems worse but it is difficult to say because in the past 6 months they have used different machines to do the tests and the can't make a true comparison...

It could simply be a product of my short sightedness. Simply put they don't know for know, all they can do is monitor the situation. My next appointment is in 6 months... I might have an answer then or I might not.... it's all up in the air.

When I thought I had the disease (the first time), I put it into perspective - at least I was aware of the situation. For many people as we age, our sight will fail anyway, but we just don't know it yet. I know that seems harsh, but during those weeks that was how I came to terms with it.
As it stands at the moment I don't know, but there is not much I can do for now.... I simply enjoy life and deal with whatever comes my way......

I notice on one of the comments, that her sister was told to buy a torch.
I am afraid that is the only advise that is helpful. Since sufferers have trouble with dusk/night vision and there is no cure, that is the only helpful solution, at present. I w
ould suggest a small torch with a powerful beam.

Help can be obtained from the British Retinitis Pigmentosa Society. http//:www.brps.demon.co.uk

This site is available in different ways, so that a sufferer of R.P. will be able to see it. This also keeps up to date information on the medical research that is going on.

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