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Retinitis Pigmentosa: Meet the disease and explore Alternative therapies

Updated on July 3, 2014

Retinitis Pigmentosa: What is it?

Retinitis Pigmentosa is a degenerative eye disease that causes severe vision impairment, and eventually blindness. According to Wikipedia.com, the progression of RP is not consistent, some people will exhibit symptoms from infancy, others not till later in life. Generally, the latter onset results in rapid decline. RP is a disease that affects over 100,000 American's daily. People with RP, lose their peripheral vision slowly, People that do not have RP have a 90 degree peripheral vision, those with RP have less than 90 degree, depending on the stage and progression of the disease. According to blindness.org, RP refers to a group of inherited diseases causing retinal degeneration. The cell rich, retinal lines, in the back inside wall of the eye is responsible for capturing images from the vision field. RP patients, experience gradual decline in their vision, because of photoreceptor cells. ( rods and cones)

The genetics: Behind Retinitis Pigmentosa

Retinitis Pigmentosa is an inherited disease, The female carries the vision traits, and experience vision loss less frequently. The X-linked RP, affect the males, males are more often and more severely affected. RP is usually diagnosed in adolescents and young adults. Most RP victims are legally blind by the age of 40 years old. The central vision field is less than 20 percent. However, rates of decline, varies from person to person, some cases may have vision until later in life, while others earlier in life. RP is a devastating disease and there are limited treatment and as of today, no cures.

Retinitis Pigmentosa : The treatments

Currently, there are no cures for this disease. There are treatments that help to extend ones eyesight, to a maximum numbers of years. For a person with RP, the vision slowly closes, as if you were looking through a straw, at first the tunnel vision is broad and narrowly affected. As the disease progressed the walls get more narrow, causing a more narrow area of vision. The treatments for today's times include:

* Cataract extraction- cataract surgery can often be beneficial in the latter stages of the disease.

* Growth Factor, Ciliary neuropathic factor (CNTF) - has been shown to slow retinal degeneration in a number of animal studies.

* Transplantation

* Retinal Prostinesis

* Gene Therapy

Patients should have annual exams, and visual field testing every 5 years. As new therapies arise, routine exams can keep patients informed on clinical trials and new treatments.

Fundus of patient with retinitis pigmentosa, mid stage (Bone spicule-shaped pigment deposits are present in the mid periphery along with retinal atrophy, while the macula is preserved although with a peripheral ring of depigmentation. Retinal vessels
Fundus of patient with retinitis pigmentosa, mid stage (Bone spicule-shaped pigment deposits are present in the mid periphery along with retinal atrophy, while the macula is preserved although with a peripheral ring of depigmentation. Retinal vessels | Source
From the outside, they look the same, but what they see may be different.
From the outside, they look the same, but what they see may be different. | Source
It slowly closes in..
It slowly closes in.. | Source
Source

Retinitis Pigmentosa: Alternative Therapies

According to Medscapes.com, There have been some promising studies on alternative therapies. With a diagnosis of RP, one may want to explore all avenues of treatment and incorporate the ones that are beneficial to you and your disease. Some of the natural remedies that have shown promising are as follows:

* Vitamin A / Beta-carotene - Antioxidants may be beneficial in treating patients with RP dosing should be 15,000 U/D. A recent Comprehensive Epidemiological study, concluded that very high doses of Vitamin A Palmitate, slowed the progression of RP.

* Docosahexaenoic Acid ( DHA)- Omega - 3 polyunsaturated fatty acid and antioxidant, Studies have shown that a nutritional intake of omega-3 fatty acids may affect the rate of decline in visual acuity.

* Acetazolamide- Macular edema can reduce vision later in stages of RP. Acetazolamide has shown the most encouraging results, with some improvements in visual functions. ADVERSE side effects include: fatigue, kidney stones, loss of appetite, hand tingling and anemia may limit it's uses.

* Bilberry- has been shown to improve vision of RP patients.

* Tumeric- According to the National Eye Institute, Tumeric, which is a versatile spice, recently a group of National Eye Institute funded researchers found that the active ingredient, Curcumin, may also be effective in treating RP.

Before exploring Alternative therapies, Check with your doctor. I am not a medical Doctor and am not claiming this to be a cure. Just some alternative therapies that have show promising in independent research.



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Retinitis Pigmentosa: Getting the Diagnosis

Retinitis Pigmentosa, is a blinding disease. If you have the diagnosis, you are probably pretty scared. Rest assured that there are things you can do to prepare for the loss of your vision. If it is your child or loved one, you are probably searching for a miracle cure. The truth is there are none. The truth of the matter is that there are current, possible cures, that may show promising. Don't give up hope. To make the best of the situation it may be beneficial to enroll yourself, child or loved one into a school for the blind, before going blind .Here you can learn all the information needed to live a good quality life, even after blindness. Blind schools can teach you how to successfully live a successful life. Along with Activities of daily living, such as, cooking, cleaning, showering and maintaining an active lifestyle through blindness. There are several benefits to maintaining a good, active quality of life. There are also support groups you can attend. Stay strong and learn that you have a purpose in this life, that doesn't require seeing.

Source

Living with Retinitis Pigmentosa

* Stay positive

* research the facts

* new treatments and possible cures are on the horizon

* prepare yourself and family

* do things you want to do before the disease is fully progressed

Retinitis Pigmentosa: Living with the disease

Living with RP, before blindness, you may want to set goals. Such as, going to scenic places, and making a list of things you want to see before you no longer have the ability. One may want to marry and have their children early in life, so you have the joys of watching them grow. Others may want to go to The Grand Canyon or Mountain ranges. Whatever your desire, be sure to accomplish them. With nutrition and regular doctor visits, you can maximize your vision into a majority of your years. Blindness doesn't mean your life has to stop, it just means you'll have to accommodate in other areas. Just because you vision has been impaired doesn't mean you have to be dependent on others. The more you learn, the more you'll be able to maintain.

Retinitis Pigmentosa cure in India

Retinitis Pigmentosa: Across the world

According to uptodate.com there are new horizons on the treatment and reversing of RP. There are treatments that have had the ability to reverse the disease process of RP. Some suggest Acupuncture, they have shown to have miraculous results in other countries. In treating RP. Western medicine are developing better treatments and possible cures every day. Don't get discouraged for it may be right around the corner. There have been cases that have slowed in progression, therefore resulting in more years of vision. Stay positive for you never know what the next study is going to reveal . In the mean time, eat lots of carrots and take your vitamins. See your doctor regularly and follow his or hers orders. For the maximum outcome possible.

Source
Family's make it through, when they pull together
Family's make it through, when they pull together
Source

Retinitis Pigmentosa : How to help

Retinitis Pigmentosa, can be very difficult to deal with, However, the family member with RP needs support and help in areas that may be difficult. The most important thing to remember is to keep them as independent as possible. Allowing one to "give up", has no benefit for the patient or family. Keep encouraging them and create a positive mind-set for the patient and the family members. One may experience dizziness once going blind, slow to arise from a sitting position may be beneficial in minimizing the dizziness. There are several prescriptions that can help with the side effects of no vision. Be sure to have a strong support group , involving doctors, family members, and friends. Love has no vision, the ability to strive carries on in ones will to. Be patient, take appropriate steps and enjoy life to the fullest extent.

In memory of p-paw, a RP victim, who never let blindness slow him down!

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