Retinitis Pigmentosa

What is retinitis pigmentosa?

Retinitis pigmentosa is the name of a group of eye diseases that are passed down in families. All the diseases involve the eye’s retina. The retina is the nerve layer that lines the back of the eye that is sensitive to light. All the diseases cause a slow but sure loss or decline in eyesight.

What causes retinitis pigmentosa?

Retinitis pigmentosa is part of a group of eye diseases that are passed down in families. All of them affect the ability of the retina to sense light. The problem with the retina can take place in any of the following:

• Rod cells
• Cone cells
• The link between the cells that make up the retina

What are the symptoms of retinitis pigmentosa?

The symptoms of retinitis pigmentosa usually begin in childhood or adolescence. However, each person may experience symptoms differently. Some people with the problem have a slow, very progressive loss of eyesight. Others lose their eyesight much more quickly and severely. Common symptoms may include:

• Hard time seeing in poor lighting or in the dark
• A reduced ability to see either central vision or side or peripheral vision
• Hard time reading print
• Hard time figuring out detailed images
• Hard time with stumbling or tripping over objects not seen
• Glare

The symptoms of the condition may look like other eye diseases. Talk with your eye healthcare provider for a diagnosis.

How is retinitis pigmentosa diagnosed?

Your eye healthcare provider will take a complete medical history and give you an eye exam. The eye healthcare provider may do one or more of the following tests to make a diagnosis:

• Eye chart test
• Ophthalmoscopy
• Refraction test
• Color defectiveness determination test
• Retinal exam
• Ultrasound of the eye

How is retinitis pigmentosa treated?

Your eye healthcare provider will figure out the best treatment for you based on:

• Your age
• Your overall health and medical history
• How sick you are
• How well you can handle specific medicines, procedures, or therapies
• How long the condition is expected to last
• Your opinion or preference

The symptoms of retinitis pigmentosa sometimes look like other conditions or medical problems. Always see your eye healthcare provider for a diagnosis.

At this time, there is no specific treatment for retinitis pigmentosa. However, protecting your eye’s retina by using UV sunglasses may help delay the start of symptoms.

A retinal prosthesis (artificial retina) has been developed for individuals with very advanced disease and severe vision loss. Talk with your eye healthcare provider for more information.

What are the complications of retinitis pigmentosa?

Retinitis pigmentosa causes a progressive loss of eyesight. It may happen slowly or more quickly.

Living with retinitis pigmentosa

Retinitis pigmentosa is a progressive condition. This means that it will continue to get worse over time. Talk with your eye healthcare provider to get information on services and devices for people with low vision.

When should I call my healthcare provider?

If your symptoms get worse or you have new symptoms, call your eye healthcare provider.

Key points about retinitis pigmentosa

• Retinitis pigmentosa is a group of eye disorders that are inherited and involve the eye’s retina
• Retinitis pigmentosa causes a slow but sure loss or decline in eyesight
• Symptoms, including loss of vision or visual sharpness, usually begin in childhood or adolescence
• Currently, there are no treatments for retinitis pigmentosa
• The use of UV sunglasses may help delay the start of symptoms

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.
• Before your visit, write down questions you want answered.
• Bring someone with you to help you ask questions and remember what your provider tells you.
• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
• Ask if your condition can be treated in other ways.
• Know why a test or procedure is recommended and what the results could mean.
• Know what to expect if you do not take the medicine or have the test or procedure.
• If you have a follow-up appointment, write down the date, time, and purpose for that visit.
• Know how you can contact your provider if you have questions.