WHAT CAN YOU DO YOURSELF?
There are some things that you can do yourself to maximally protect your ears, eyes and balance and so improve your quality of life.
PREVENT STRESS OF THE ENDOPLASMIC RETICULUM
Research has shown that the incomplete or not functioning protein complex causes a transport problem. It accumulates in the endoplasmic reticulum (ER). This is called ER stress, because this accumulation heavily burdens the cell. Prolonged ER stress makes the rods and cones in the retina as well as the hair cells in the inner ear slowly die.
Intense light can accelerate the dying of cells in the retina. Therefore researchers and physicians advise wearing sunglasses when the light is intense to protect the cells of the retina.
PROTECT YOUR EYESIGHT
There is no treatment for retinitis pigmentosa yet, but you can do a number of things to keep your eyes healthy as long as possible. Of course, a healthy lifestyle with a varied diet is always good for the eyes. This also holds for sufficient exercise. Intensive use of the eyes is tiring for people with poor eyesight, but it is not harmful. Smoking is harmful to the eyes, because nicotine and other components of the cigarette can narrow down the blood vessels in the retina. This leads to less oxygen and more accumulation of toxic waste products in the retina.
PROTECT YOUR HEARING
- Also protect your ears against prolonged and loud noise
- Daily wear hearing aids and/or cochlear implants in order to keep stimulating the auditory nerve
- Ensure the very best and optimum hearing rehabilitation to make sure that although your eyesight is deteriorating, you can still get as much as possible information from what is going on around you.
- Be aware of the negative (temporary) side-effects of some medicines on hearing, tinnitus and hyperacusis.
REGISTER FOR CRUSH DATABASE
As a patient you also bear a part of the responsibility for unravelling Usher Syndrome yourself. Therefore register for the CRUSH database of the National Usher Syndrome Expert Centre in the Radboud UMC (Nijmegen, the Netherlands).
PROTECT YOUR BALANCE
What can you do yourself to improve your balance? Apart from balance exercises there are also tips and tricks to support you in case of balance problems. The use of some medicines can also (temporarily) influence your balance.
