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LIVING WITH RETINAL DYSTROPHIES

 

   

FREQUENTLY ASKED QUESTIONS

  1. What are the symptoms of RP?
  2. What causes RP?
  3. Is there any treatment?
  4. Is only vision affected?
  5. Does "night-blindness" mean a person has RP?
  6. How quickly will I lose my sight?
  7. Living with Retinitis Pigmentosa?
  8. How can I help a friend or family member?
  9. Why should I continue to see my Ophthalmologist?
  10. How can I protect my eyes?
  11. Is there any pension rebates?
  12. Driver Issues... When should I stop driving?
  13. What about my career?
  14. Diet and Exercise?

1. What are the symptoms of RP?

One of the earliest symptoms of RP is "night blindness" where there is difficulty seeing at night and in dimly lit places. This is accompanied by a progressive loss of peripheral vision (side, upper and lower), leading to "tunnel vision". Frequently, in time, central vision also deteriorates.

2. What causes RP?

The death of photoreceptor cells in the retina is responsible for the symptoms of RP. A defective gene that fails to have the essential balance of proteins produced to keep photoreceptor cells healthy causes this. Over 100 gene defects have been recognised and so far research scientists have isolated over 30 defective genes causing forms of RP.

3. Is there any treatment?

There is no medical treatment to date...but world-wide research and studies are growing strong with positive results. In the foreseeable future, gene therapy may make it possible to substitute a healthy gene for a defective one.

4. Is only vision affected?

Yes, in most cases. However, syndromes combining RP and one or more other problems affect a minority. One example is Usher's Syndrome, in which deafness accompanies RP.

5. Does "night-blindness" mean a person has RP?

No, in some cases night blindness does not represent any significant eye disease.

6. How quickly will I lose my sight?

Progression of RP can vary from person to person. It is important then to be evaluated by a specialist eye physician. For some, the loss of sight is slow and there may be only a small loss over perhaps ten years or more. Others have periods of rapid loss, often with years in between with no apparent decline. Some will have poor vision since childhood or teens; for instance, they probably experienced difficulty with ball games or getting about at dusk. Classically the outer fringes of vision are affected initially, causing apparent clumsiness and an inability to see at dusk. In other cases the central vision may be affected first, causing difficulty in detailed work such as reading and identifying colours.

7. Living with Retinitis Pigmentosa?

The first and hardest step towards living positively with a disability is accepting it. Accepting that you have RP will not be easy. You may go though periods of despair and of feeling resentful, bewildered or even angry. Adjustments are made and coping mechanisms help to live with the condition. Learning to adapt and having a positive attitude governs the type of life you and your family will share from day to day. Never write yourself off, with effort you will not miss out on many of life's enriching experiences. Anything that you can do now you will be able to do with a more severe vision loss with training.

Help with coping mechanisms is available through your local Retina Australia branch or Guide Dog Associations around Australia.

8. How can I help a friend or family member?

Try not to be overprotective, either as a parent or a spouse but observe what he or she can do without help. Listen to any suggestions such as how to arrange the house, keeping the floor clear of objects, not moving the furniture around too often, shutting cupboard doors and never leaving doors half open. When out, try to give warning of unexpected hazards such as steps, sloping pathways, uneven surfaces and doorways.

If you are the one with RP, attempt to explain how much you can do without assistance. Ask for help when it is needed; explain the type of help needed. Directional help is often useful i.e. 2 steps to the right and a step forwards. Learn how to be a 'sighted guide' correctly. The family that is always tense and over protective can be morale destroying. Sighted members of the family may need constant reminders not to leave things in your path, with time they will come to understand the degree of vision loss that you have.

Adjustments need to be made at varying times. Both the person affected by RP and the family need to patiently understand the adjustments necessary. Living with a disability can be hard for the other members of the family too. The affected person can do much towards making life happier by explaining to those around how they can best be helpful.

Remember that RP is a progressive disorder and that, consequently, the needs of a person with RP will change from time to time. It is often difficult for members of the family to understand that something, which was helpful five years ago, may be of little use today.

9. Why should I continue to see my Ophthalmologist?

When the diagnosis of retinitis pigmentosa is made, ophthalmologists often tell patients that there is nothing that can be done to cure the disease. While this is true at our present state of knowledge, there are many other factors, which need to be considered to ensure the optimum use of remaining vision.

Visits to the ophthalmologist may therefore continue to be important for the following reasons:

  • Obtaining a second opinion
  • Monitor the progression of the disease
  • Referral for blind pension when sight deteriorates further
  • Assessment of other family members and referral to a geneticist
  • Referral to local support agencies such as Retina Australia
  • Referral for mobility instruction from Guide Dogs
  • Prescription of glasses to help improve residual vision
  • Diagnosis and removal (when necessary) of cataracts
  • Diagnosis of other eye conditions, which may make vision worse, such as glaucoma and diabetes.

10. How can I protect my eyes?

The eyes need to be protected from Ultra Violet, Blue Light and glare. This can best be achieved by using 'blue block filters and UV protection. Your Optometrist should be able to help by accessing a product call 'Blue Guard' which is available in Australia from Sola based in Adelaide.

11. Is there any pension rebates?

The Disabled Persons Pension (Blind) is available to all who are legally blind through Centrelink. (See Legal Blindness, below). The Blind Pension is not means tested.

12. Driver Issues...

When should I stop driving?
One of the most contentious issues for someone losing their sight is the loss of their driving license. Many people find this one of the most difficult issues to face as it has major implications to independence, spontaneity, convenience and simple ease of access to many places and activities.

Obviously this is a very personal decision, hopefully, made with one's own, and public safety in mind. Some drive until their license expires, others make a choice not to drive on the advice of their doctor or experiences on the road as their sight is deteriorating.

Good vision is essential when driving a car. A person with sight loss will take longer to see a potentially dangerous situation and may react too late to avoid a crash.

Most people with RP are unable to drive at night. Some are still able to drive during the day. Unfortunately, there may come a time when you have further loss of sight and it is very important to be aware this may reduce your driving ability and your safety.

The law states that the legal requirement for driving is vision of 120 degrees across the midline for Retinitis Pigmentosa, Retinoschisis and Choroideremia. 6/12 in the better eye for Cone cell degeneration, Stargardt and Best Disease and Retinoschisis.

When one is legally blind it is illegal to drive. There is also a duty of disclosure concerning insurance.

Legal blindness is when vision is:

  1. Less than 6/60 in the good eye (With glasses) or
  2. A field of vision constricted to 10 degrees or less.

The term legal blindness is very frightening but most people who are legally blind still have a lot of useful vision.

If you are told by your Ophthalmologist that you are legally blind you are eligible for the Blind Pension which is means test free. Taxi concession cards and rail and bus passes are also available (Check with your state)

There are a few states that have driving assessment centres where disabled people can be assessed for road performance and one can be recommended to drive beyond the legal requirement. These centres provide on road assessment and training with the aim of achieving top driving skills. The assessment may include remedial strategies or modifications to the vehicle. (Approach your state Retina Australia branch for details).

Will I be able to continue to read, watch TV and perform other visually detailed tasks?

Some people with RP retain good central vision throughout their lives. Others have more blurred central vision. Some are unable to distinguish colour and a few become effectively totally blind. Loss of central vision seems to be varied and not predicable.

13. What about my career?

People with retinal disorders continue to lead very productive lives. There are examples of successful careers in management, sales, education, social work, architecture, banking, law, catering, computing, farming and many others.

After coming to terms with the problem and finding the right assistance, difficulties can be overcome and great things achieved.

14. Diet and Exercise?

Many have asked the question on diet and exercise...It has been recommended that exercise and a diet rich in antioxidants may be of some benefit. Through research it has now been proven that irreversible damages to the retina are caused from smoking.

 

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