Real People with RP

Testimonials and stories from real people living with RP

Clinical Trials

Information, updates on all current and past clinical trials

Research

Up-to-date research on cures, diagnosis, prevention, etc.

Retinitis Pigmentosa

A website dedicated to living with RP

Monthly updates on clinical trials, diagnosis and treatment information, preventative degeneration tips, and more. 

Explore RetinitisPigmentosa.com

Living with Retinitis Pigmentosa

Stories from real people with the disease

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Clinical Trials

Information on all the current and past Retinitis Pigmentosa clinical trials

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Learning Center

Current 'cures' available and tips on preventing further degeneration

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Diagnosis: How-to Diagnose Retinitis Pigmentosa

Current 'cures' available and tips on preventing further degeneration

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What is Retinitis Pigmentosa (RP)?

Retinitis Pigmentosa, or RP, is part of a group of inherited retinal diseases (IRD) that is caused by a mutation on one of 60+ genes. However, there are other IRD’s in addition to retinitis pigmentosa. All in all, there are 250 genes that can be the cause of an inherited retinal disease. While retinitis pigmentosa is a rare genetic disorder, with only 2,000,000 estimated worldwide to have it, it is the most common IRD. 

Retinitis pigmentosa impacts the photoreceptor cells in the in the retina, called ‘rods’ and ‘cones’, causing them to fade and die. In a typical case, RP affects the rods first. Rods allow us to see in dim light and are located on the outer part of the retina. This is why the first symptoms of RP are typically night-blindness and a loss of peripheral vision. It then moves on to the cones which are located centrally in the retina and control our sharpness and central vision. 

Most people with retinitis pigmentosa are legally blind by the age of 40. However, every progression is different because RP comes in many forms. Some are blind before adulthood and some maintain vision into their 60’s or later. 

What is RetinitisPigmentosa.com?

This is an extremely rare disease, and because of that, there is a lack of information and resources on the internet to help people like myself who are living with RP. In people with normal retinal function, rod cells and cone cells regenerate themselves when damaged. With RP, ours do not. Our eyes slowly degenerate over time as our retinal cells die off. Treatment options are extremely limited and the majority of cases are currently un-treatable.

In current treatments and clinical trials, we need enough life in our rods and cones to be treated or admitted. So what are we to do? We slow the degeneration as much as possible, to extend our vision, in the hopes that a widespread treatment becomes available. However, waiting and hoping for a cure is no way to live, so we must take steps to learn to live with our condition. Visit here to see how others are living with RP.  

That’s why this website is here. 

Retinitis Pigmentosa information, causes, cures, clinical trials, resources, and more

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