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RETINITIS PIGMENTOSA THE NEED OF "LIGHT".

RETINITIS PIGMENTOSA THE NEED OF "LIGHT".

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Started by Jaana Kossila 12 years, 2 months ago
I have an inherited eye condition called RP = Retinitis Pigmentosa http://www.galloways.org.uk/eyeinformation/eyetab06.html

RP makes gradually my peripheral vision narrower and the central vision can be affected too. All this makes it hard to orientate in unfamiliar surroundings and our vision gets worse not better because there is no cure at the moment. One of the most important things for us with RP is the need of good lighting both inside and outside our homes because as the condition progresses so does our ability to see when it gets dark outside or inside. We are provided extra lights by the social office BUT they do it without any knowledge of what kind or how much lighting we need. The assessment of our need of lighting must be done by a professional. It is just not ok to put up one or two horrible lights which are really no use for us at all. I want the Assessment workers and Social Office workers get a better understanding what kind of lighting we need and use professionals to assess our need of lighting. So, please sign this petition and help us get the lighting we need so we can feel safe in our homes without hurting ourselves by not having the lighting we need.

The suggestions for better lighting:

1) do not turn off street lighting after midnight, as is an increasing practice
2) that as LED lighting replaces sodium, the light emitted is not reduced. Even a small drop in the knight emitted by a street lamp will increase the numbers of VI unable to function outside after dark.

3)A vision rehabilitation professional to do the right kind of

lighting measurements suitable for us.

Updates

May 30, 2014

The stories shared in the comments reveal how many people navigate these same challenges in silence. Reliable lighting is not a luxury but a fundamental necessity for safety and independence. Connecting with others who understand this daily struggle validates why this conversation must continue with the social office.

May 30, 2014

Seeing the steady growth of this cause reminds me that the challenges faced by those with RP are recognized by many more people than I initially imagined. This growing momentum reinforces the necessity for professional oversight in how our homes and streets are illuminated.

36 Comments

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Sam Heaton
12 years ago Featured

Lighting issues is one of the biggest problems for me. It has a massive impact on how i can use my remaining low vision, affecting my mobility, and abilitwm

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Pauline bennett
12 years ago Featured

I have rp and night blindness...We need appropriate lighting to help us live as normal a life as possible. .We also need lights outside...street lights that u might have a chance to see something by !!!

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Anonymous
12 years ago Featured

Please turn the street lights back on. We're trapped inside from 16:00 in the winter

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Joe Metiva
7 years ago

My brother has this disease and I would like to see a cure

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Yvonne Osborne
10 years ago

this is a must

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Jaana Kossila · petition starter
12 years ago

Thank you for signing :)

J
Jaana Kossila · petition starter
12 years ago

Thank you for signing :)

J
Jaana Kossila · petition starter
12 years ago

Thank you for signing :)

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