1. What is Next after Diagnosis?
The most common reaction after being told you have retinitis pigmentosa is fear. It is a frightening disease as you usually do not know how fast it will progress, and there are decisions to be made that affect your daily life. Do not go through this alone.
Everyone needs some support. Family can be helpful and talking to other people who have lived with this disease is also helpful. One of the easiest ways to avoid isolation is to get involved in some retinitis pigmentosa website support groups where your questions can be answered by other people that have RP, and you will also learn new ways of coping with any limitations due to poor vision.
2. Becoming informed about the Disease
One of the best sources of information is on the Foundation Fighting Blindness website, and look for Retinitis Pigmentosa. This page will answer many of your questions. Learning about your disease and what to expect will build your confidence for the future.
3. Protect your Eyes
Always wear UV protective sunglasses and a hat when you are outdoors. Protecting your eyes from the sun may help slow the disease. If you smoke, it is time to stop. Nicotine constricts blood vessels, and that includes the blood vessels in your eyes.
4. Talk to Your Doctor about Natural Treatments
Your doctor will help you decide what supplements will be most helpful in prolonging your sight. There have been some excellent studies on vitamin A palmitate. Clinical trials have shown taking 15,000 IU daily will prolong your vision, and the National Eye Institute supports this dosage. Eat a healthy, well-balanced diet, but do not seek out more foods that contain vitamin A.
Fish oils (omega-3) may also help to slow deterioration of your retina. Foods that are good sources of omega-3 include: salmon, sardines, tuna, flax seeds, walnuts and other types of fish.
Do not take a vitamin E supplement.
DHA has also been shown to slow the course of this disease. Take 1,200 mg of DHA daily along with your vitamin A.
Lutein may help if you have mid-peripheral retinitis pigmentosa. The proper dosage is 12 mg. Clinical data showed that vitamin A and lutein slowed the visual field loss for non-smokers.
5. Talk to Someone about Your Feelings and Fears
Talking to someone you can trust about your fears and your feelings can help you cope with the changes that vision loss brings to your life. Sometimes a family member may be too emotionally involved. You might try a good friend, a counselor or your pastor. Confiding in someone you trust can make you feel so much better. This person should listen and be supportive.
6. Contact Your Local Center for the Blind for Help
When you are newly diagnosed you may still be able to do most things. For instance, most people can still read. However, if you need some special tools for nighttime or travel, contact your local center for the blind. They know how to work on special needs as they have the aids necessary for helping people who are visually impaired.
7. Consider Acupuncture to Manage RP and Slow Progressive Vision Loss
A recent study at Johns Hopkins University showed acupuncture to be improve vision in patients with Retinitis Pigmentosa. Acupuncture works to stimulate the nerve cells, increase cellular ATP production and improve blood flow to the retina. Acupuncture is rapidly increasing in popularity for people with RP especially since its safe with no known side effects. Currently, acupuncture seems to be the only proven treatment for improving vision for people with RP.
Be sure to check out the best Retinitis Pigmentosa and Acupuncture treatment guide if you are considering this as one of your treatment options available.
