Thank you to the American Council of the Blind - www.acb.org

Fore-Sight

The Newsletter of the ARIZONA COUNCIL OF THE BLIND INC.

Volume 6# 1 June 2000

From the President's Desk
Daniel Martinez

People who are blind represent a cross section of our society. Anyone can become blind, anyone. Blindness crosses all lines of age, sex, nationality and economic status; it does not discriminate. Children are born blind or severely visually impaired every day. Accidents, primary eye disorders, complications from other physical ailments and age can all cause blindness.

Given that people who are blind come from every strata of society, why is it that the majority of them live on incomes below the poverty level? That is an easy one. The majority, according to best estimates over 70%, of people who are blind do not work. Therefore, they live on Social Security Disability income or some other form of pension.

One might think since the majority of those who are blind do not work, it must be that blindness is such a severe disability it makes it impossible for the blind to acquire the skills necessary to be employed. This is not the case, while it is difficult for the blind to become job ready, it is achievable. People who are blind work in a wide range of occupations form attorneys, physiologists, and engineers to cashiers, machine operator, and labors and many jobs in between. So we know from examples it can be done.

We know that the work ethic is the dynamo that powers the American dream. When people who are blind are unable to participate they become isolated, discouraged and struggle with feelings of low self worth. They become disenfranchised from the world of possibilities.

So, If you are blind and want to work and do not know what services are available, give us a call and we will share resources information with you.
Arizona Council of the Blind call (602) 273-1510 .

MACULAR DEGENERATION
Edwin Druding, Editor

The eye is like a camera with the cornea being like a clear glass in front. The iris is the part of the eye that adjusts the amount of light entering the lens like the f-stop on a camera. Next is the lens, which focuses the image on the retina, which is the film in a camera. If that film has some defects, such as lacking some of the materials on that plastic backing or being wrinkled, the image sent to the brain is going to be distorted or have black holes on it. The retina of the eye is composed of about ten layers of specialized cells called rods and cones. The rods are responsible for receiving low levels of light and mainly black and white stimuli, whereas the cones are the color receptors. The macula is the small area of greatest focus in about the center of the retina. Damage to cells in the retina are permanent and these cells do not heal nor reproduce themselves therefore when that damage is in the peripheral area of the retina a condition called Retinitus Pigmentosis occurs. Persons with this condition see as if looking through a straw. However if damage is in the area of the center or macula of the retina then blind spots occur then the individual has only peripheral vision.

Many folks develop this condition as they get older. This is referred to as Age-related Macular Degeneration or AMD. This degeneration is also found in children, sometimes new-borns and is called Stargardts disease.

There are two types of AMD, dry and wet. In the dry Drusen, which are yellowish deposits that form under the retina causing a lump in that 'carpet' of the retina and the retina loses its pigment. Eventually atrophy occurs and calcification of the retinal cells. There is no vision in these areas. The wet AMD occurs in 80% of advanced cases and causes acute vision loss. This is due to leakage in abnormal blood cells and capillaries in the retina. Laser is an option for treatment in wet AMD but frequently destroys healthy retinal cells also and leaves a small blind spot.

Two new drugs are being used in experimental cases. (Wet)
1. Prolictin- Still in experimental stage.
A photosensitive chemical is injected into the patient and a critical period of timing to allow the substance in the blood to reach the retinal veins, then a 'cool' laser light triggers the action of the chemical destroying only the damaged cells. The disadvantage is that retreatment is necessary in three months.
2. Visudyne- Just approved by FDA on April 15, 2000. It is only for wet type. Experimenters conducted a masked study of 402 eyes where 2/3 were given the drug and 1/3 given a placebo. 94% showed significantly fewer lines lost than the placebo group. Treatment costs $1200 for the laser and $700 for the drug. Retreatment is also necessary after 3 months but there is evidence that this may be lengthened to 6 months or longer. Patients on Cumidin were ruled out in the original study, but will be included in future studies.

There is a difference between Macular Degeneration and Macular Dystrophy. Dystrophy is from defective nutrition whereas degeneration is a genetic disorder. Blue-eye, fair skinned northern Europeans are high risks for MD. It is relatively unknown in the African continent and among the aborigines in Australia. However, those Australians of British background are very high in MD. Smoking is a multiplier of the factors leading to MD. Studies of Arab families show a high genetic predisposition for passing this condition on due to the tendency of close family intermarriages with first and second cousins. A genetic test costs $900 in materials alone for complete study of one gene. This does not include the technician's salary.

Genetics and environment play key factors in MD. Persons subjected to UV rays of the sun also present high risks. High cholesterol also seems to be a factor.

In identical twins, there is 100% chance if one has it the other does also. It drops to 45% for fraternal twins and 14% for siblings. Because eye conditions were not specifically identified in generations past it is difficult to do much on genetic prediction. It is interesting that new studies of a person's fingerprints show greater similarity between unrelated individuals who are AMD than related persons without AMD. This is a new field just in the early phase to perhaps facilitate identifying individuals and possible alter lifestyles to deter the condition.

Another type of Macular Degeneration is called Best's Disease. It doesn't mean that it is any better, it is the name of the man who discovered the "egg-yoke" formation on the retina.

They have identified the gene associated with MD and RP. It is the ABCR gene. It is a long complex one. When it is not present RP is definite. There are over 120 million light receptors in the retina. The ABCR gene is in the cones, not in the rods. There is a theoretical possibility that some unaffected genes might be injected into the bone marrow hopefully to regenerate unaffected genes that would find its way to the retina.

Treatments- (mostly experimental at present)
Laser treatment- for Drusen causes it to shrink somewhat. Nothing permanent.
Matrix Metaloproteinase Inhibitors- Tumors have a way of tricking cells into making blood vessels grow to nourish it. By developing inhibitor cells it shrinks the tumor. This theory is being applied to the Drusen somewhat successfully.
Fetal Cell Transplants- Cells from fetuses and from umbillical cords in new-borns have "stem cells" which are undifferentiated. Like new recruits into the service they have not been trained. Therefore in implanting them under the retina which does not reject these cells for some reason does reproduce new retinal cells. This holds a lot of promise for future surgeries.
Interferon alpha2a- Used in AIDS patients created greater vision loss, so is being abandoned.
Macular translocation- Lifting the retina and rotating it a few degrees. This leaves the patient seeing things off at an angle, but the brain quickly adapts to this new situation.
Photodynamic Laser Therapy- This was described earlier where patients are injected with a photoactive chemical. The cool laser light causes the leaking vessels to clot. It showed 61.4% patients stablized with 16% showing one line of vision improvement.
Microcurrent Stimulation Therapy- A probe emitting a very precise low current is placed at specific points on the body. The surface of the body differs greatly in its surface conductivity, so points of low resistance are chosen to allow for greater penetration of that low current. The National Institute of Health published a Consensus Statement which included acupuncture points for pain treatment and the microcurrent stimulation of those same points that "The incident of adverse effects is substantially lower than that of many drugs or other accepted medical procedures for that same condition". It did not state that it was effective enough to recommend it. Results are still coming in.
Anti-oxidant Vitamins and Supplements- The jury is still out on these items. Several researchers indicate that there is no effect. Others will attribute some success to the placebo or the experimentee's desire for success for the researcher. No double blind experiment has yet been published, although there are some in the works.
Telescopic Implants- I was fortunate enough to see one of the new Galallian telescopes which have been implanted in the lens cavity and focuses on an undamaged area of the retina. This tricks the retina into thinking that this is the macula now and has been successful in over 900 operations in Israel and Europe. The cost is $5000 and does not seem to have a rejection factor.

Other Breakthroughs
Robotics- Robots now able to make smaller incisions thus enhance healing. By computer and satellite, a surgeon in New York can use a robot to perform surgery on a patient in Europe.
Tee-shirts- and other garments made of special fiber optics send signals to satellite can be programmed that if the person is wounded or having a fever would send the signal to correct the malady. This is also a breakthrough for nurseries to warn of SID babies or other breathing distresses.
Enzyme Medications- Injected into bananas and other foods which would be easier for the patient to swallow.
Genetic Engineering- Altering plants and animal genes to make it more beneficial in specific areas and less harmful in others. Tobacco industry is deeply involved to make the hardy tobacco plant produce more fragile products like lettuce. This is already here. Today's sandwiches may be adorned with yesterday's cigarette plant.
Retinal Implants- These are not successful, in part because of tissue rejection. Even reaping retinal cells from the persons own retina are failing, because retinal cells are long, parallel cells and transplanting them is like seeing a brick wall with a hole in it and a sloppy job of stuffing some bricks into the hole to fill it up.
Cataracts- New surgery techniques employ a small probe with a laser and vacuum. It is like a miniature jack-hammer connected to a vacuum cleaner to break up the cataract and suck out the debris and implant a folded up lens at the same time. No stitches required. Healing immediately.

What can I do about my vision??
1. Understand your condition. Ask about the diagnosis.
2. Determine what part of the retina can be utilized for vision. Develop the peripheral vision.
3. Using special low vision chart determine visual acuity
4. Determine refraction area with opthalmoscope.
5. Evaluate the retina
6. Learn off-centered reading using the portion of the retina that has vision.
7. Sometimes adding a telescope lens to the glasses helps increase the visual field
8. Proper lenses will magnify the field so that the de-generative retina is minimized.
9. Lighted magnifiers help some people.
10. Large print items and publications available. Banks and utility companies are cooperating.
11. Light control. What is comfortable for you.
12. Corning Glare control lens. Yellow lens for UV
13. Preventive measures: Quit smoking, UV protection, proper nutrition, (poor nutrition leads to MD), Exercise-circulation in body also increases circulation in eyes, stress reduction.

Eye rehabilitation: reading is the best exercise for eye muscles and visual system operation.

Subjects Wanted!
New Research On Diabetes.
eResearchOnline.com is conducting a scientific study about stress and
diabetes, in conjunction with adherence to your diabetes treatment regimen. This study does not involve testing of any medication, nor does it require you to change your existing diabetes treatment plan. If you qualify for this study you will be asked to fill out several psychological questionnaires as well as
visit a local laboratory for some routine blood analysis. In addition to receiving the free blood test results, you will also be compensated for your time, when you complete the study (any compensation will be paid in U.S. dollars). If you are interested in participating, the first step is to visit our web site and complete the initial interview survey.

http://www.eResearchOnline.com

This survey will give us information to determine if you qualify to be in our study. If you are eligible you will be contacted with further instructions and complete details about this research study.

If this email was incorrectly sent to you, we apologize for the inconvenience, if you know of someone with diabetes and you think they may be interested in participating, we would appreciate if you could forward this message to them. All information given to eResearchOnline.com through its questionnaires or subsequent phone interviews, will not be used for any commercial purpose and will be kept completely confidential. This information will not be shared or sold to any other organization. This in a non commercial email, if you never wish to be contacted again, please forward this message to remove@eResearchOnline.com and your email address will be removed from our mailing list..

The purpose of eResearchOnline.com is to use the internet to increase the scope of research to a global level. Recruitment Dept.

From the Web Master
By Tom Belsan

If you are looking for a product that is designed with the blind in Mind, than there are several Vendors on the AzCB Web Page to research. Yes, the internet is a place to find information and products that can help us. I have just added a new link under the Vendor Section of the AzCB Page. It is called Super Products and has mostly phone stuff but is worth a look. Below my ending signature is an example of the page, read to the bottom of this message.

Regards, Tom - KB7NRG
E-mail tbelsan@aztec.asu.edu
Arizona Council of the Blind Web Page is at http://aztec.asu.edu/azcb

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Words from Membership Chairperson
By Gail Irons

A woman went into an underwear shop to buy some undies. After choosing some skimpy panties, she turns to the owner and asks if it is possible to have something printed on them. He replied "Certainly madam, what would you like?" She answered, "If you can read this you're to close!" He said "No problem, what font would you like?" She replied "Braille"

Wishing You Bright Skies,
GailElaine

(Who said blind people do not have a sense of humor? That is the sense used when other senses fail!)

Sense of Taste?

Arizona Council has an on-going project of selling SEE'S Candy Bars. They sell for $1.00 and are good. Please help Arizona Council by buying some for Father's Day or for any day in particular. It would help the Council tremendously. For orders of $10.00 or more, I would not mind making the delivery within the Valley area. We also will sell See's pound boxes when ordered in advance for $12.00. Please be specific as to the selection ordered; Milk or Dark chocolate, and Nuts and chews or soft centers for the boxed variety.

Scholarships Awarded
By Tom and Ruth Belsan

Three scholarships were awarded at the AzCB Convention last month. The recipients are: Marlo Koller, Veronica Ouwendijk and Stephanie Lanari. Marlo has received the scholarship in the past and is pursuing her Masters at ASU West. She will also receive a scholarship from the American Council of the Blind next month. Stephanie will enter Mesa Community College in the Fall. Veronica is from Holland and will receive her AA Degree in the Fall 2000.

Congratulations to all of you and to those who submitted applications as well. We need more money from our fundraising projects so we can offer more scholarships to worthy applicants. Wont you help by donating money to the scholarship fund?

Arizona Council of the Blind Home Page.
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