There is no treatment for retinitis pigmentosa yet, but you can some things to keep your eyes healthy for as long as possible. Of course, a healthy lifestyle with a varied diet and drinking moderately is always good for the eyes. Sufficient exercise is healthy for the eyes as well. Although intensive use of your eyes may be tiring for people with poor eyesight, this is not harmful. Smoking, however, is harmful to the eyes. Smoking narrows the blood vessels in the retina and this is exactly the most vulnerable part of your RP eyes.
It is advised to visit an ophthalmologist every two years, even though the examinations may sometimes be really burdening and the results can be confrontational. The ophthalmologist can signal other eye disorders that can possibly be treated if timely discovered. See What other additional complaints are there?
Apart from this, it is also recommended to simultaneously make an appointment with an ENT specialist and ophthalmologist of the National Usher Syndrome Expert Centre in the Radboudumc (Nijmegen, the Netherlands). Then you will be included in the CRUSH database, which will enable you – provided that you meet all inclusion criteria – to participate in studies and trials for future treatments.
Retina Complex particularly contains extra vitamin A. This vitamin is soluble in fats as a result of which the surplus of vitamins is not removed by urination but stored in the body where it will accumulate. There are types of RP in which this accumulation is absolutely harmful to the eyes. This also holds for vitamin E, another vitamin that is soluble in fats. This does not hold for other types of RP. Usher Syndrome probably involves a problem in the transport of the proteins and therefore it is expected that any accumulation of vitamin A will not be harmful to the eyes. Taking Retina Complex or other dietary supplements is controversial. Patient really want to ‘do something’ to retain their eyesight for as long as possible. However, there is no scientific evidence of these supplements being actually useful. At the same time expectations are that taking these supplements when suffering from Usher Syndrome is not harmful either. Therefore always first discuss the use of supplements with your ophthalmologist, preferably with an RP specialist.
Anti-malaria medicines are not good for people suffering from RP. Apart from this, long-term use of Chloroquine in high doses is harmful to the eyes. These medicines are prescribed for rheumatism, but they can well be replaced with other medicines. Therefore always tell your treating physician that you suffer from RP/Usher Syndrome.
See the medicine guide for additional information about (harmful) medicines for the eyes.
No scientific evidence has been found for the fact that wearing sunglasses or sun cap would protect the eyes. Still, it is advised to wear sunglasses, because these make sure that less light comes into the eyes. Light activates the photoreceptors and these send an electric signal through the optic nerve to the brains. This makes us observe light and enables us to see. People suffering from RP have very vulnerable photoreceptors and these are slowly dying. Sunglasses make sure that these photoreceptors are less activated and perhaps they remain intact for a longer time because of this. Scientific research has been done into the effects of ER stress. Read more about this by pushing the button.
Wearing glasses, though minimal the correction may be, can help to decrease the tiredness of the eyes by looking strenuously. There are also filter glasses that increase contrast. Apart from these, there are numerous tips and tricks to help you in daily life. You can read more about this in the section ‘Usher in daily life’. If you want to know more about rehabilitation and aids, please look in the section ‘Rehabilitation’.