DESCRIPTION
Retinitis pigmentosa (RP) is an inherited disease that affects approximately 1 out of every
3,700 people. The retina is the innermost layer that lines the eyeball. It contains photoreceptor cells
that are directly connected to the brain by the optic nerve.
In this disorder, metabolic flaws slowly but progressively destroy retinal cells over time.
It causes the rod photoreceptors in the retina to gradually degenerate. The rods are located in
the periphery of the retina and are responsible for peripheral and night vision. Cones, another
type of photoreceptor, are densely concentrated in the macula. The cones are responsible for
central visual acuity and color vision.
The disease may be X-linked (passed from a mother to
her son), autosomal recessive (genes required from both parents) or autosomal dominant (gene
required from one parent) trait. Since it is often a sex-linked disease, affects males more
than females. People with RP usually first notice difficulty seeing in dim lighting and
gradually lose their peripheral vision. The course for RP varies depending on the person. For
some people, the affect on vision may be mild. Others experience a progression of the disease
that leads to blindness. In many cases, RP is diagnosed during childhood when the symptoms
begin to become apparent. However, depending on the progression of the disease, it may not
be detected until later in life.
SIGNS & SYMPTOMS
The first symptoms usually is loss of night vision, beginning in adolescence or young adulthood.
This is followed by loss of peripheral vision and, ultimately, blindness, which sets in anywhere
between the ages of 30 and 80. Usher syndrome is a variation of retinitis pigmentosa that also
impairs hearing.
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- Difficulty seeing dim lighting.
- Tendency to trip easily or bump into objects when in poor lighting.
- Gradual loss of peripheral vision.
- Glare.
- Loss of contrast sensitivity.
- Eye fatigue (from straining to see).
DIAGNOSIS
Retinitis pigmentosa is usually diagnosed before adulthood. It is often discovered when
a person complains of difficultly with night vision. A health care provider, such as an
ophthalmologist, diagnoses RP by examining the retina with an ophthalmoscope. The classic
sign of RP is clumps of pigment in the peripheral retinal called "bone-spicules." A test
called electroretinography (ERG) may also be ordered to study the eye's response to light
stimuli. The test gives the health care provider information about the function of the
rods and cones in the retina.
CONVENTIONAL MEDICAL TREATMENT
There is currently no standard treatment or therapy for retinitis pigmentosa. However, scientists
have isolated several genes responsible for the disease. Once RP is discovered, people are
encouraged to seek genetic counseling.
RECOMMENDATIONS
Get a thorough eye evaluation by an eye care professional who specializes in retinitis pigmentosa. An
accurate diagnosis sometimes can be difficult to obtain, but it is getting better through increased
awareness and more sophisticated technology.
RESEARCH
Scientists at Johns Hopkins University are developing a micro-computer chip prosthesis
called the Multiple-unit Artificial Retina Chipset (MARC). Once implanted in the retina,
the chip transmits images to the brain that are captured from a small camera mounted on the
glasses of a person afflicted with RP. The chip is still in development and is not yet
available for widespread use. Health care providers and researchers continue to search for
treatments for RP but have yet to find a cure.
HOLISTIC RECOMMENDATIONS & NUTRITION
NUTRITIONAL SUPPLEMENTS
Unless otherwise specified, the dosages recommended here are for adults. For a child between
the ages of 12 and 17, reduce the dose to 3/4 the recommended amount. For a child between
6 and 12 years of age, use 1/2 the recommended dosage, and for a child under the age of 6,
use 1/4 the recommended amount.
|
Nutrients |
| Supplement |
Suggested Dosage |
Comments |
| Coenzyme Q-10 |
60 mg daily. |
A powerful antioxidant that can improve retinitis pigmentosa symptoms.
CoQ10, Vegetarian Coenzyme, NOW Foods, 30 mg, 60 VCaps,
CoQ10, Now Foods, 400 mg, 60 Softgels |
| Vitamin A |
15,000 to 75,000 IU daily. If you are pregnant, do not exceed 10,000 IU daily. |
Helpful for all eye disorders. Use emulsion for easier assimilation
and greater safety at higher doses.
Vitamin A, Nature's Way, 10,000 IU, 100% Natural, 100 Softgels |
Plus
Natural Beta-Carotene
Or
Carotenoid Complex |
As directed on label. |
Needed for all eye disorders.
Beta Carotene (Natural Dunaliella Salina), Nature's Way, 100% Natural, 25,000 IU, 100 Softgels,
Multi-Carotene Antioxidant, Nature's Way, 60 Softgels |
Plus
Lutein |
As directed on label. |
Lutein can help protect the retina from harmful ultraviolet (UV) light and
free radicals. Needed for all eye disorders.
Lutein Supplement, Nature's Way, 20 mg, 60 Softgels,
Lutein Esters, 20 mg, 60 Softgels |
And
Zeaxanthin |
As directed on label. |
Needed for all eye disorders.
Visi Clear With Lutein, Bilberry, Zeaxanthin & Lycopene,
|
CONSIDERATIONS
High doses of vitamin A can slow the loss of remaining eyesight by about 20 percent per
year, according to Dr. Eliot Berson, professor of ophthalmology at Harvard Medical School. At the same
time, the study found that high doses of supplemental vitamin E (400 IU or more daily) can be detrimental
to people with retinitis pigmentosa.
Retinal cell transplantation and gene therapy are still in the preliminary stages of research, but
both may prove to be effective in treating retinitis pigmentosa. Photoreceptor cells have been transplanted
successfully into the retinas of animals. The Foundation Fighting Blindness reports that it remains to
be seen whether or not this procedure will be effective with retinitis pigmentosa-type disorders. Meanwhile,
researchers have identified many of the mutated genes that contribute to the condition. It may become
possible in the future to use gene therapy - to replace defective genes with normal ones - as a
treatment for the disorder.
More information on this disorder can be obtained by contacting:
- RP International
- PO Box 900
- Woodland Hills, CA 91365
- Tel (818) 992-0500
- Fax (818) 992-3265
- E-mail: info@rpinternational.org
- The Foundation Fighting Blindness
- 11435 Cronhill Drive
- Owings Mills, MD 21117-2220
- Phone: (800) 683-5551 (TDD)
- Fax: (410) 363-2393
- National Retinitis Pigmentosa Foundation, Inc.
- 11350 McCormick Rd., #800
- Hunt Valley, MD 21031-1002
- Phone: (800) 683-5555
- Phone: (800) 638-5683 TTY
Other Resources:
- John Wenberg's RP Links
- Retinitis Pigmentosa, New Zealand
- Retinitis Pigmentosa, Blindness Resource Center
- Foundation Fighting Blindness, Canada
- RP Association, Spanish
- Retinal Preservation Foundation, South Africa
- RP Page, Australia
- Retinitis Pigmentosa, Johns Hopkins School of Public Health
- Swedish RP Foundation (Svenska RP föreningen)
- Swiss Retinitis Pigmentosa Association, (Retina Suisse)
- British RP Society
- Retina France (French RP Association)
- Retina International
- Dutch Retina Foundation (Retinastichting Nederland)
- Retina New Zealand
- Retinitis Pigmentosa, Lighthouse International Vision Resources
- The Finnish Retinitis Society (Retinitis-yhdistys ry)
- Canadian National Institute for the Blind
- Royal National Institute for the Blind
- Retinitis Pigmentosa Foundation, Norway
- American Foundation for the Blind
- National Federation of the Blind
- Retinitis Pigmentosa, EMedicine
To locate a genetic counselor or clinical geneticist in your area:
RELATED LINKS
Retinitis Pigmentosa
About Eliot L. Berson, M.D.
Massachusetts Eye & Ear Infirmary: Staff Listing
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NOTIFY YOUR HEALTH CARE PROVIDER IF...
You or a family member (such as a child) is having problems distinguishing colors or find
colors confusing. This member may need to be tested for colorblindness.
You or a family member are having problems with vision and/or you suspect an infection.
Call your health care provider immediately if you experience severe eye pain or a sudden
change in your vision, such as loss of vision or double vision.
You have any increase of symptoms. You may need frequent changes in your eyeglass
prescription. If you have blurred or double vision that develops slowly; are having a
problem seeing because of daytime glare or have difficulty driving at night because of
glare from headlights, you need to see your health care provider.
You have any unexpected or unusual symptoms. There may be underlying health issues that
need to be addressed.
Are having vision problems that are affecting your ability to perform daily activities.
Call your child's health care provider if your baby does not look directly at or respond
readily to faces or large, colorful objects by age 2 to 3 months or if your child scowls,
squints, or shields his or her eyes more than expected when in sunlight, or light seems to
hurt your child's eyes.
You and your family members should have your eyesight checked
regularly by your health care provider to rule out any problems and to receive a prescription
for contacts or eyeglasses, if they are needed. Preserve you vision... it is very important.
TYPES OF EYE PROBLEMS & DISORDERS
Maintaining Healthy Eyes
Bags Under The Eyes
Bitot's Spots
Blepharitis
Bloodshot Eyes
Blurred Vision
Cataracts
Colorblindness
Conjunctivitis (Pinkeye)
Corneal Ulcer
Diabetic Retinopathy
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Eyestrain
Floaters
Glaucoma
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Photophobia
Pinkeye
Retinal Edema
Retinal Hemorrhage
Retinitis Pigmentosa
Scotoma
Shingles (Herpes Zoster)
Stye
Thinning Eyelashes
Ulcerated Eye
Ulcerated Eyelid
Vascular Retinopathy
Xerophthalmia
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