Retinitis pigmentosa

Retinitis pigmentosa (RP) refers to a group of hereditary eye disorders which affect the retina.

What is retinitis pigmentosa?

The retina is the light sensitive tissue lining the back of the eye. Retinitis means disease or inflammation of the retina. Pigmentosa refers to how the retina appears in this condition, as the retina can have dark spots of pigment. The parts of the retina affected can be the rod or cone receptors, these sometimes are affected from birth or slowly stop over time. Sight loss is gradual but progressive. It is unusual for people with RP to become completely blind.

What are the Symptoms of retinitis pigmentosa?

There might be some difficulty seeing in low light such as outdoors at dusk or in a dimly lit room. The visual field is also reduced and sight loss can be from above and below. This is often referred to as tunnel vision it means that the rod cells and some of the outer cone cells have been affected first. In some RP related conditions central vision is lost first and the person affected can have difficulty reading print or doing detailed work. In many types of RP the glare from bright lights can cause a problem although some people do not suffer from this until the condition has developed.

Young Children

Parents may notice the following signs in their children and that their vision has reduced.

Eyes moving to and fro - this is known as Nystagmus
Touching their eyes
Roving eye movement

An optician can check how their eyes react to bright light. Some children may have other symptoms of RP which do not relate to their vision it may only be later that vision is affected. Other symptoms of RP are conditions such as low hearing, learning difficulties and reduced growth.

What are the causes of retinitis pigmentosa?

Retinitis pigmentosa is caused by genetics. A person with RP has often inherited a gene from one or both of their parents, although the condition can often skip generations.

RP occurs because the retina can not respond to light properly. The problem can be in many parts of the retina such as the rod or cone cells or in the connections between the cells of the retina. In most cases the early symptoms of RP develop between the ages of 10 and 30.

What should I do?

RP is best detected by an examination of the inside of the eye using a opthalmoscope by a doctor.

A normal eye test may not detect peripheral and side vision loss. There are other tests which measure the area of visual field and the ability to adapt to low lights.

Can it be treated?

There is no treatment available to cure or prevent the progression of RP.

Living With/How will I cope?

There are low vision devices which can help magnify, reduce glare and illuminate objects at home and in work. Children can wear spectacles to help the vision parts of the brain develop correctly. There are many practical changes that can be made to help.

Is there a cure?

Scientists are researching treatments such as retinal implants and drug treatments.

Other Related Conditions

People with RP often develop cataracts. These can be operated on once they reach a certain stage. The lens can be replaced or glasses prescribed. Depending on the condition of the retina a certain amount of vision might be restored after the operation.

Usher Syndrome

People with RP can also inherit another condition called Usher Syndrome, which is when people develop hearing loss. For more information on Usher Syndrome please contact SENSE.

Other Types of RP

Some of the other types of RP are rod-cone dystrophy, Leber’s Amaurosis and Batten’s Disease.

What support does Action offer?

We have Action for Blind People resource centres across the country where expert staff can show you resources which are available and advise you on the best products for your needs.

Action for Blind People has regional offices all over England with trained staff who will know what resources and support services are available in your area.

You can call the RNIB Helpline on 0303 123 9999 and coordinators will provide you with impartial support and advice on everything to do with visual impairment.

Further information and other organisations

You might find it useful to read the eye anatomy section on our website as it explains in detail how the eye works.

RNIB have information on eye conditions from the Royal College of Ophthalmologists.

British Retinitis Pigmentosa Society are a charity supporting people with RP. They organise support groups you can join which are nationwide.