July, 1994

Dear Silicone Survivors and Friends:

As some of you already know, I just became a grandmother again. My daughter had a little boy, Justin Dennis Fox, on June 24th (at 3:52 A.M.!). I have three beautiful granddaughters already. I have been in better health since my bout with pneumonia during the end of April. I am sure that I need a lot more rest, but then, don't most of us? I have been to Cincinnati for the Medical Symposium there and also to Houston to see Dr. Lewy. I also have been to Washington, D.C. in June. The first Grand Junction, CO meeting was held on June 29th, so I drove 250 miles each way to speak there. July will find me in Salt Lake City speaking for a meeting sponsored by Integrity Implant Concerns, then the MDL Hearings will be held in Denver. Unfortunately I will be in Anchorage to speak there during the time of the MDL Hearings. The end of July will find me in Pueblo, CO as they make a second attempt to start a group. In August I will be in the California Bay area to speak for Project Impact and then on to Los Angeles and San Diego. We hope to start a group in Cheyenne, WY on August 13th. I have requested to speak at the Fairness Hearings in Birmingham, AL on August 18th. After that I will wing off to Oregon and Washington State. I plan to attend the North Carolina Conference August 27th. Who knows what September or October will bring?! I hope to be in Australia in November as I have been invited to speak there for several groups. My goal is to stay home for one straight month before the end of the year.

I testified at the FDA Hearings on Saline Implants in Washington, DC on June 2nd. If you would like a copy of my speech, send $1.00 and a SASE. I basically told them that I feel silicone is unsafe for implantation in the human body. I also told them that there is no such thing as a non-cosmetic breast implant surgery, that mine was for reconstruction and it was for a cosmetic purpose. I also said that just because there is a psychological need for an implant doesn't mean that there is a medical indication for one and that implanting a foreign object into the body should not be a natural extension of plastic surgery. I was given five minutes for my speech and I took about 5 1/2 minutes. I think it went well. A number of other group leaders also testified. We had less women represented than I expected. Jane Zones of the National Women's Health Network and Esther Rome of the Boston Women's Health Collective testified. Janet VanWinkle of AS-IS testified. Kathleen Anneken was there to testify but was too ill and someone else read her speech. I met some group leaders there whom I have spoken with a number of times on the phone but never met in person. A number of plastic surgeons testified also, but as you might suspect, they testified that saline implants are safe. Dr. Bernard Patten, Dr. Britta Ostermeyer-Shoaib and Dr. Robert Ira Lewy testified about the dangers of these implants. I hope and pray that we were heard!

We are saddened to report that CTN (Command Trust Network) will discontinue their newsletter after the Winter issue (Dec., 1994). They will continue working on the issues around breast implants. We thank Kathleen Anneken and Sybil Goldrich for all their hard work and hope that others will continue producing newsletters to aid all of us in our search for knowledge.

The settlement packet and the claims forms are available from COSS if you have not received them. If you are unable to get them from the MDL 800 number, please send us $5.00 and request the settlement packet and claim forms. The settlement packet plus questions and answers is about 40 pages long. The claims forms are 6 pages long. The entire global settlement proposal is also available. Send $5.00 and request the global settlement agreement.

The Multi-District Hearings will be held in Denver on July 13th and 14th. The actual MDL Hearings will be at the Brown Palace Hotel at 9:00 A.M on the 13th. The hearing before Judge Pointer will be held at the Federal Courthouse on the 14th. This is usually at 9:00 or 10:00 A.M. Both are open to the public, although there has been a time or two when it was difficult to sit in on the MDL hearings with the Plaintiff's Steering Committee. These meeting are held all day (9-5).

There are some unanswered questions that I feel need to be addressed. Insurance subrogation is one, the number of women who may become members of the class is another, the fear that this may become a mandatory class action is a third, whether or not a woman may send in forms to be placed on the grid after she has already sent in the registration form is a fourth, the issue of having women have so little time to be placed on the grid is a fifth, the inability of women to find attorneys to retain is a sixth, the issue of some attorneys charging money up front for women to help them be placed on the grid is a seventh. The list is probably much longer, but these are some issues that come to my mind.

By now, most of you have heard about the infamous Mayo Clinic study that was released stating there is no connection between silicone implants and connective tissue disease. We should all remember that there have been studies stating that there is no connection between tobacco smoking (chewing, etc.) and different forms of cancer. Like these studies, the Mayo clinic study is biased. After all, Dow Corning is a major contributor to the Mayo Clinic and the ASPRS funded this study by funds that seem to have been donated by the manufacturers of implants, the chemical companies. Anytime you have a problem with a defective or dangerous product, the manufacturers of that product are going to go on the offensive to try to prove that the danger is either non-existent or minimal. This is the politics of the game. They have to do something to shore up their public image. The timing on this study being released as well as the warnings about Dow Corning taking out bankruptcy were not coincidental. They were deliberately timed to come out just before the opt-out deadline of the class action suit to scare most women into joining. And it worked. It worked amazingly well. Score one for the manufacturers. Check our list at the end of the newsletter for information on obtaining this article.

Having the Mayo Clinic (with Dow Corning as a major contributor) do a study (with the ASPRS Education fund paying for it) on breast implants is tantamount to having R.J. Reynolds Tobacco Company do research on the dangers on cigarettes or second-hand smoke or having the automobile companies do research on gas tanks that explode on impact. How can you believe a study where the researchers have a financial interest in how the study comes out to show themselves as the good guys.

If you had your implants placed at Mayo Clinic between 1964 and 1991, lived in Olmsted County, MN and may have been part of this study contact Sharon Phillips of WASP at (612) 422-3890.

Dr. Britta Ostermeyer Shoaib and Dr. Arif Shoaib announce the arrival of Master Anim Nael. He weighed 8 pounds and 12 ounces. We are delighted that he is healthy and that Britta is well.

UPCOMING EVENTS: S.I.A.S.T. has resumed meetings in the Kansas City area. They are held the second Monday of each month, 7-9 P.M. at Johnson County Christian Church, 10150 Antioch, Overland Park, KS. The number for information is (913) 752-4036.

STAND of Sacramento meets the third Sunday of every month at U.C. Davis Medical Center's Cancer Center auditorium. Contact STAND, P.O. Box 3443, Citrus Heights, CA 95611.

San Joaquin Silicone Survivors meets the first Saturday of every month at the Kingsburg High School Theater, Kingsburg, CA. Contact Jackie Hall, 545 Prospect Avenue, Visalia, CA 93292.

There will be a Symposium for Plastic and Reconstructive Surgeons in Sante Fe, NM, August 24-27th at the Eldorado Hotel. Of course, none of us would be welcome even if we could afford to attend, but those of you in the area may wish to know about the activities of the plastic and reconstructive surgeons. Dr. Henry Jenny sent me this information. See below in legal information for the ASPRS stand on this class action suit.

Triad Silicone Network, Jill Stone, of Greensboro, North Carolina is sponsoring a National Breast Implant Conference entitled Medical and Legal Awareness 8:00 to 6:00 P.M. on August 27th, 1994 at the Holiday Inn Four Seasons-Koury Convention Center Ballroom, 3121 High Point Rd. in Greensboro. Speakers are: Dr. Pierre Blais, Dr. Lu-Jean Feng, Dr. Andrew W. Campbell, Dr. Nachman Brautbar, Dr. Aristo Vojdani, Dr. Rahim Karjoo, Dr. Frank Vasey, Dr. Paul Cheney, Dr. Bernard Patten, Dr. David Smalley, and Patti Scher, R.N. (Co- Author-Untold Truth). There will be a special appearance by Jenny Jones of the Image Foundation. Cost (which includes continental breakfast and a lunch) for consumers is $45.00 in advance and $60.00 day of conference, consumer and significant other $75.00 in advance and $90.00 day of conference, professional $55.00 in advance and $70.00 day of conference. Hotel reservations can be made at the Holiday Inn Four Seasons (910) 292-9161 at $80.00 per night (up to four people in room) by identifying yourselves as being with the Triad Silicone Network Conference. For more information, call Jill at (910) 854- 5338 or write to her at Triad Silicone Network, P.O. Box 7631, Greensboro, NC 27417.

Notify us of your SPECIAL meetings by the 23th of the month and we will try to include them in our newsletter.

LEGAL INFORMATION: Health insurance companies are writing letters to patients and asking them if they are a part of this class action suit. Because of the confidentiality of this suit, they cannot find out unless they write and ask you. Some are sending certified letters to be sure you have received them. Kaiser recently has done this in Colorado. What should you do? If I received one, I would ignore it. Make them earn any $$ they receive from any monies due you. Any $$ paid in the class action will be for pain and suffering and therefore should not be attachable by any health insurance company. (In some states, this may not be true, so check with your attorney.) Even the amounts in Funds I-V are for unreimbursed medical expenses. Don't sign for the certified letters and don't speak with them unless you have to. If you do sign for the certified letters, don't respond. Volunteer nothing!!!!! If they wish to obtain the information from you, let them file with the court and make it mandatory that you answer them. If it costs them enough to try to get the information, they may decide it is not worth the trouble. After all, only one in four or five women with breast implants will join the class. Can you imagine what it would cost them to file with the courts to check on every woman they have treated. They are on a fishing expedition and your money is the prize. Be like the largest trout in the pond and turn your back on the hook. Remember how hard it was and is for most of us to have any of our expenses paid for under our health insurance. Now they have the gall to try to come and get what little money they have paid from a fund intended for pain and suffering only. It's another case of the big companies trying to victimize the victim. Don't help them victimize you!!!

Dow Corning has withdrawn their offer to help with explantation expenses. What little they had offered to pay ($1200.00) is no longer an option. Women who considered this option have less than one year in which to contact this manufacturer to see if they can receive any funds for explantation. Of course, we have never recommended this option anyway, but some women did choose to go this route. Some women signed away their rights to ever sue for this paltry sum. This is another instance of the victims being revictimized.

ASPRS position on the class action: The settlement is a business decision, meant to meet business needs. It was not based on any scientific finding about the devices. Research continues to show no conclusive link between silicone and disease. Even though the settlement lacks a scientific basis, the Society supports the fact that it will assist in bringing closure to a process that may have been long and difficult for many women. Plastic surgeons are not named in the settlement. ASPRS members rejected a request to contribute to the settlement, asserting they did not believe plastic surgeons should financially participate in a non-scientific product-liability matter. Insurance carriers for the members shared this view. ASPRS leaders have repeatedly requested that "hold-harmless" provisions be included in the agreement, at a minimum releasing individual surgeons from liability for any and all claims related to the product. The settlement includes an "order" indicating that no plastic surgeon would be released from liability for breast implants. If plastic surgeons are sued in state courts , the settlement indicates that plastic surgeons would be unable to countersue manufacturers for that liability. Because state courts will probably honor the global settlement, settling manufacturers will be dropped from state cases involving settling plaintiffs. This may leave the plastic surgeon as the sole party named in a state lawsuit. Some plaintiffs may then drop these suits. Judge Pointer has suggested the concept of surgeons providing in-kind services, and ASPRS is in the process of evaluating the feasibility of a "Surgical Services Program". If agreed to, it would be included in the final settlement as a public service program where surgeons agree to remove breast implants from patients at no charge. In turn, surgeons would be released from all product liability, malpractice and failure to inform patient participants in the settlement. Plastic surgeons and their office staffs should handle patient inquiries about the settlement with care. Doctors should consult with their counsel before communicating directly with patients who have lawsuits pending against them. ASPRS is preparing a sheet of guidelines to assist in this matter. (COSS has no comment on this position. It is self-explanatory.) For a copy of the ASPRS Special Bulletin of April 1, 1994 that this information comes from, send $1.00 and a SASE ($.29 postage) to address at top of newsletter.

HELP YOUR ATTORNEY!!!! Don't expect your attorney to do all of the work. Get your medical records together. Collect the information from your plastic surgeon and your hospital if your implants were placed during a hospital stay. Highlight all the salient portions of your medical records that show your disability and your symptoms. Make a chart chronologically of dates (by month) of when you saw these doctors and outline the symptoms discussed with the doctor (must be indicated in the records) and any diagnoses. Keep your attorney informed of any new doctors you see. Keep a copy of the chart so you can add to it periodically. If you have memory problems, get a friend or family member to help. Being a survivor means taking control of your life and getting your records in order. Attorneys do not usually have time to organize everything for every client and in order for you to be placed as high on the grid as possible or to get your case ready for court, you must help with this type of information. We are hearing from attorneys who are becoming quite disgusted with women who continue to play the role of victim. Take action!!! This is one way to reclaim your life!! We are survivors, not victims!! We all need to work on this concept!!!

The grid is set up so that the most seriously ill women will receive the most compensation. This is only fair. However, many seriously ill women will not receive the amount of compensation they should because they will not get their testing done in time or will not find an MD who will place them properly on the grid. Some have avoided MD's because they were treated badly. Some cannot find an attorney who will represent them at all. Some attorneys are playing games now because they have to be paid on an hourly figure instead of receiving a percentage of the funds. Some are even charging women up front.

Remember, it is to your advantage to get testing done to try to be placed on the highest possible place on the grid for this class action. This is not to say that you should try to get higher than you are, but many women will be placed on a much lower spot than they should be placed. The A, B, C, and D categories are not well understood. A Florida support person sent me some information that I will try to summarize. If a claimant has not been very ill, is still able to work (full or part-time), has a family history of any related diseases (Rheu. Arth., Lupus, etc.) or has a pre-existing condition (which could contribute to symptoms), she will fall into the 20% disabled or C category. Expect them to go over your records thoroughly to check for any pre-existing or familial conditions. Submit your evidence in a systematic, clean manner so they can be checked for the evidence that supports your % of disability.

If your records indicate that you have been very sick, are unable to work at all, have no family history of related diseases and no pre-existing conditions, you will fall into the B category. Most claimants will fall into the B, C, or D categories. D category indicates 0% of disability. Only a few claimants will fit into the A category at the top of the grid. You must be essentially bed-ridden, unable to perform such personal care duties such as feeding yourself, bathing, dressing, grooming, toileting, etc. without assistance. Even some of the most seriously ill women will not even be placed in this category.

Although some may disagree, I feel that the amounts in the matrix will be reduced substantially as over 450,000 women have contacted the 800 # for the class action suit. I fully expect a large number to never enter this suit as they determine all the hassles that they will have to go through to establish a claim. I also expect at least half to fall the bottom in Funds I-V, where there is no reduction in amounts because it is pro-rated to those who apply to the fund. If 100,000 women fit into this category that will receive only 12% of the funds (1.2 billion, or perhaps double that if the manufacturers put more $$ into the pot), then there will be very few dollars for these claimants. Only unreimbursed expenses will be paid from this fund, so you have to show that you tried to get coverage for these services and were refused by your insurance company. These claimants may then qualify as on- going claimants. 33% of the funds are allocated for atypical diseases and Sjogren's Syndrome. The majority of women will be placed in this category, in the A, B, or C categories. Only a small number of the women will actually be placed in the top categories where there are the most funds. These are atypical neurological, dermatomyositis or polymyositis, mixed connective tissue disease, overlap syndromes, lupus and scleroderma. The disease schedule will be affected by age of onset when you can prove that you had the specific disease. I do expect that Judge Pointer will make this class action mandatory for all who have not opted-out as women find out how much $$ they will actually receive and will feel betrayed and then wish to opt-out. If ten to thirty thousand (or more) women decide to opt-out after being given the amounts they will actually receive, then the Judge may feel he has no option other than making the class mandatory because of the effect all these cases will have on court systems around the country. In any case, if you have already opted-out and plan to proceed with your case in court, you may escape this if it does become mandatory.

As to fund pay-outs, don't expect any money soon. With the extensive number of women who have contacted the MDL for claim forms and the large numbers that will probably file claims (200,000 or more), it will take much longer than it states in the class action proposal for anyone to receive any money. Look for it to be 2-3 years. Also, don't expect a lump sum payment. You may receive any amount awarded you in several installments.

MEDICAL INFORMATION: Continuing Education Home Study Courses available for nurses. Legal Aspects of Breast Implants, Course $354, 4 contact hours. $29. (800) 824-1254. This course from the National Center provides answers to important questions regarding silicone breast implants. Learn what questions the breast implant client is asking the caregiver concerning implants. Know the advice and answers the clients are seeking that will quell their legitimate fears and misconceptions. (COSS comment: All we need is more nurses to be indoctrinated with the same methods that are being used by plastic surgeons to put the women down.)

HYPOCALCEMIA (abnormally low blood calcium) characterized by a syndrome called TETANY: A deficiency or absence of parathyroid hormone characterized by low serum calcium and high serum phosphorus levels. One form of this illness is called Pseudohypoparathyroidism which is characterized by bone and kidney unresponsiveness to PTH (parathyroid hormone). Idiopathic hypothyroidism may be connected to Addison's disease and mucocutaneous candidiasis (candida in the mucous membranes and the skin). Hypocalcemia may be caused by a magnesium deficiency or a Vitamin D deficiency which can occur because of intestinal malabsorption (nutrients not being absorbed by the intestines) or because of dietary deficiencies, which then causes a deficient secretion of PTH. Other problems also can be related to this illness, but these seem to be the ones that would occur in silicone-affected women. Overdoses of Vitamins D or A may cause hypercalcemia.

Symptoms: Symptoms are primarily neurological. Mild, diffuse encephalopathy (any dysfunction of the brain) which causes dementia (impairment of intellectual functioning, usually progressive), depression, or psychosis. Papilledema (edema and inflammation of the optic nerve at its point of entrance into the eyeball) may occasionally be present and cataracts may develop after a long period of time. The most characteristic syndrome is tetany [a nervous condition characterized by intermittent tonic (muscular tension and contraction) spasms, usually paroxysmal (sudden, periodic attacks) and involving the extremities]. These are characterized by nervousness, irritability and apprehension, numbness and tingling of the extremities, cramps of the various muscles (particularly of the hands, such as carpopedal spasms and sometimes of the larynx), and extreme extension (straightening) of the feet. Carpopedal spasms are spasms of the hands and feet. Spasms of the muscles may be triggered by pressure applied to nerves and blood vessels of the upper arm (Trousseau's sign) or spasms of the face may be triggered by a tap on one side of the face over the area of the facial nerve (Chvostek's sign). Another diagnostic sign is a prolongation of the S-T segment of the ECG (Electrocardiogram) which is usually indicative of low calcium. Hyperventilation may cause signs of tetany.

SCAR CAPSULES: We continue to hear that surgeons are telling women that they do not need to have their scar capsules removed and that the body will absorb the scar capsule. THIS IS NOT TRUE!!!!! If your body would absorb the scar capsule that is your own bodily tissue, what would keep it from absorbing other bodily tissues? Scar capsules must be removed to remove all the silicone oil and polymers that have imbedded in the capsule. Several women recently have had to go back and have ancient capsules removed and they have found that the capsule continued to grow and it has destroyed pectoral muscles, grown into lung tissue and had to be dug out of the rib area. One woman's scar capsules weighed over three pounds each. Most women we know do not get better until the scar capsules are removed. I went back 7 1/2 months after my last implant was out to have the scar capsule removed. Please have a surgeon who believes that this is necessary do your surgery. The last thing I would want is a surgeon who does not believe that this is necessary doing my surgery. That's what I had, and believe me, it was not a pleasant experience.

We still hear about women going to Mayo Clinic and having evaluations. Most report being told that there are no problems with implants. Many report being told that their problems are psychological. Are you aware that Mayo gets some of their funding from the manufacturers of implants? Now, we would all like to believe that does not bias their medical opinions....., right?!

LABS: Rumor is that Pacific Toxicology Lab in the Los Angeles area is doing some research that is being funded by Dow Corning. This research seems to be similar to what BALCO Labs has done on elemental silicon without being funded by the manufacturers. A word to the wise.....!?

We understand that Met-Path Labs and Nichols Institutes are owned by Corning, Inc. Guess which labs many of the MD's are sending our blood tests to?? We encourage you to find out which lab your tests will be sent to!! We encourage you to utilize IDL (Immuno-Diagnostic Labs), Immunosciences Labs, Antibody Assay Lab, National Health Labs, Smith-Kline Labs, Beecham Labs, Balco Labs, etc. While we are not saying that labs owned by Corning would give false readings, we do see a possible conflict of interest issue with blood work being done by these labs.

BALCO Labs has just come up with a program that will help you receive grid- specific tests at reduced prices. The panel can be done as a whole ($340) or you may just order the tests for atypical problems, neurological problems or other illnesses. This cuts the costs way down for many who could not afford the complete panels. Call (800) 777-7122 for more information and for instructions on how to obtain these tests.

Immunosciences has a panel for $350 called an Immunoserological Panel. It covers basically everything on the grid also. Call them at (800) 950-4686 for information on how to obtain the kit for these tests.

American Medical Diagnostic Laboratories, Inc. (AMDL), Dr. Rahim Karjoo, 15941 Kaplan Avenue, City of Industry, CA 91744. (818) 330-0772 FAX (818) 369-5692 has spelled out the procedure for submitting breast implant capsule and breast tissue specimens for pathologic evaluation. 1) The implants should be placed in containers, dry or in saline solution, and labelled as left and right. 2) The capsules should be placed immediately in containers of formalin and identified on the containers' labels as right or left. 3) Biopsies from the surrounding breast tissue both distant and close to the capsule should be obtained, placed immediately in formalin, and containers labelled accordingly. 4) Each container should be labelled with the complete information of the patient and location of the biopsy contained therein. 5) Should your implants and/or tissue not have been saved, you should forward tissue blocks and/or slides from your explantation procedure. 6) A Pathology Request requisition form (supplied upon request) should be filled out for each patient and should contain all relevant information. 7) Specimens should be sent to us via Federal Express on a "Dangerous Goods" airbill. All boxes should have Merchandise Class 9 labels on two sides. A Federal Express representative can help you with these details. 8) The specimens should be accompanied by the check or money order for our fee made payable to Rahim Karjoo, M.D., Inc. Please check with our office for our fee schedule. We will forward a receipt, with appropriate procedure and diagnosis codes which you can submit to your insurance company for reimbursement of our fee.

A signed Pathology Report, containing detailed Gross and Microscopic examination of the case, as well as Diagnosis and relevant Comments will be sent to the patient or her designated representative within a turn-around time of approximately 10 working days to 2 weeks. Each finding will be accompanied by a clear photograph to provide documentation of the microscopic evidence. Our laboratory will be happy to forward copies of our reports and pictures to an attorney or a consulting physician. Please call for Pathology Request requisition forms. If you have any questions, please call Dr. Karjoo's office at the above number.

ALTERNATIVE MEDICINE: Spirulina can increase your energy level. It is a natural herb available at health food stores or through your Naturopathic Doctor, Wholistic MD, or Nutritional Therapist.

Royal bee pollen is said to boost energy also. It should also be available in the same places as the spirulina.

The Creative Wellness Institute in West Palm Beach, FL offers a unique approach to holistic healing combining the mind, body, and spirit. Call (407) 832-7348 for more information on this program. Insurance probably does not cover this program.

QUESTIONS & ANSWERS: Q. I have had no sexual drive since 5 years after I received my implants and my husband is quite frustrated by this. Now that I have my breast implants out, will my sex drive return? A. It may return. Mine did. Give it some time. As your health returns, other normal bodily functions should return. Be optimistic. Many women are reporting that they now have at least some interest in sex after explantation. It may take up to five years before you will know how much of your interest in sex will return. Q. I am hoarse much of the time and this started eight years after I had implants. Will this get better? A. In most cases, we hear that it does get better. My last surgery was over two years ago and I still get hoarse at times, but it is better. Q. Have you heard about bone spurs and growths on the bones anywhere on the body from silicone or saline breast implants? A. Yes, I hear that this has occurred on the ribs, on the feet, on elbows, and in other places. Calcium may be leaching out from inside the bones to cause deposits. When you think of all the chemicals that were in silicone implants, that seems perfectly logical. But women with saline implants seem to have this problem also. It may be from a chemical imbalance cause by autoimmune disorders. Q. I have chronic yeast infections. Is this related to my implants? A. It absolutely can be! Fungus is opportunistic and will invade any organism that it can. If your immune system is suppressed, you can have fungal infections anywhere on your body. We hear a lot about fungal problems in fingernails and toenails. Some women have little white flaky spots on their bodies that may indicate the presence of candida. Candida can mimic the problems we have with arthritis and it's presence should be considered. Try lots of garlic, including odorless capsules, over the counter candida remedies, and no sugar (in any form, including sucrose, fructose, lactose, maltose, etc., so check salad dressings, ketchup, barbecue sauce, etc.), simple carbohydrates, dairy, fruit, or red meat for several months. Prescription drugs for fungal problems may help also in conjunction with a yeast-free diet. Check with your doctor.

IMPORTANT: Suzanne Slater of LipoMatrix of Palo Alto, CA called to tell me that she is very excited that they are designing a new breast implant made of a silicone polymer envelope and soy bean oil. Now, if saline in a silicone polymer shell is unsafe, who would believe that soy bean oil would be safe in a silicone polymer shell. Her phone number is (415) 354-4694 if you would like to call her to tell her your viewpoint about this potential implantable product.

INFORMATION AVAILABLE: Janie Cruise, of Silicone Scene is taking orders for her updated resource directory. The consumer's directory is available for a $25.00 donation and the professional version for a $55.00 donation from Silicone Scene, 1050 Cinnamon Lane, Corona, CA 91720. For more information, FAX Janie at (909) 272-1128. Janie Cruise also has an excellent newsletter which is published monthly and it is available for $24.00 annually from the same address.

COMMENTARY ON GROUP LEADERS: The fascinating, fast-paced, fabulous, fun- filled, frolicking, fantastic, fearless, festive, fatiguing, flagrant, facetious and frivolous life of your group leader, as described by the group leaders with whom I keep in contact. 1) Group leaders are always in the limelight. (They never have a minute to themselves.) 2) They get to travel a lot. (They live out of motels and eat bad food in restaurants, as well as being chronically fatigued by the travel.) 3) They talk to and influence a lot of people. (Someone always wants something from them.) 4) They hobnob with attorneys and doctors. (They try to help attorneys and MD's understand the needs of the women, sometimes with little success.) 5) They receive a lot of attention from the press. (They wish they could make a statement and have it correctly quoted or not taken out of context. They also wish that more women would speak out so that the press would not always call them.) 6) They have too much power and authority. (They spend long hours doing newsletters, arranging meetings, and gathering information to try to help keep their groups informed.) 7) They are too assertive, aggressive, or bold. (If they weren't, do you really think they would get anything done? These are often the qualities of a leader. You can't be a leader without being criticized for something by somebody. Usually the worst critics are the ones who wish they were the leader but who would not or could not make the effort to do so.) 8) I can never get the group leader on the phone. (Group leaders probably answer the phone all day long [If they don't work as well as being group leader] and sometimes they do need to take a break. Leave a message. Group leaders cannot be available 16 hours a day.) 9) My group leader cut me short when I called for information. (Group leaders aren't perfect. They get numerous calls and very few breaks. They sometimes have bad days. Try to have a little empathy. Call back another time when the day is perhaps a little less hectic.) 10) My group leader is always gone somewhere. (She is probably attending a conference, going to the MDL Hearings, speaking for another group, or involved with some other function related to breast implants. This is what makes her a leader. She cares about the cause.) 11) I need someone who is always there to talk with. (Make connections with other group members. Ask for phone numbers at the meetings. Take the responsibility to find the other women who have been involved for a long time and build a relationship with them. Your group leader has many functions and simply cannot always be there for every member, even though she probably wishes she could.) 12) I offer to help but she doesn't call me. (She probably talks with so many people that she can't remember who has offered to help. Call and remind her. I'm sure that she never has enough help.) 13) I never know what the money I give as a donation is used for. (Call and ask what expenses the group has. Some of them are postage, copying, space rental for meetings, costs of getting speakers to come to meetings, telephone (especially long distance), FAX, travel, supplies and equipment, etc. Costs often exceed income.) 14) There are always so many women asking her questions at the meetings that I never get to speak with her. (Make contacts with other long-term group members. Call the group leader and leave a message and I'm sure she will get back with you. Be patient, as she probably receives many calls. Keep your calls brief, as she has a lot to do and a very limited amount of time to get everything done. Right now, with all the calls, every group leader is super-busy.) 15) My group leader never answers the phone. I always get the answering machine or messaging service. (Leave a message. Most group leaders I know spend most of their days on the phone. If you wish to speak with her, the only way may be to leave a message on that dreaded answering machine or service. In many cases, when she is on the phone it automatically rings the messaging service so she may be there and could call you right back.) 16) My group leader took one of the speakers (a doctor) to dinner and paid for his and her own dinner with the group funds. (If an MD or other expert volunteers his/her time and comes to speak, common courtesy would dictate that they be taken out for dinner, at the very least. Let's not get nit-picky with such small details but focus on the really important stuff, like how much information this speaker was able to give the women.) 17) If I want written information from my group, I have to pay for it. (Group leaders often go out on a limb financially and pay for much of the literature out of their own pockets. I don't know a single group leader who is not in the hole financially. Everyone should pay as much as they can for literature and handouts. Donations really help.) 18) My group leader seems more involved with the national issues that with our local group. (There are many ways to work to try to make the situation better for all silicone/saline survivors. Some of the earlier group leaders have been fighting the cause nationally for a long time. I was testifying before the FDA in November of 1991. That doesn't mean that they are not keeping up with the local issues. Try to become more involved locally if you feel there is more need for that. Offer to have group meetings in your home or put up flyers for the group or.....? There is always more work to be done than there are hands to do it!) 19) Our group newsletter editor has made some mistakes in the newsletter and this upsets me. (If all of us were perfect, life could get very dull. Everyone makes mistakes. Just ask yourself if there is more good and correct information than mis-information. Making a big deal out of this is counter- productive. Offer to help to try to make it more accurate. Criticizing is harmful to the cause as a whole. Let's all try to help each other.)

PERSONAL COMMUNICATION: If you see red in your peripheral vision, call Georgia at (503) 697-7956 or write to her at P.O. Box 315, Lake Oswego, OR 97034.

Dora De Pasqua would like to correspond with anyone interested or involved in metaphysics/spirituality. Write to Dora De Pasqua at 55 Kenmore Avenue, Newark, NJ 07106.

Jill Wood is doing research for her book "Coping With Interstitial Cystitis and Silicone Toxicity". If you are experiencing any of the following symptoms, your input would be of great value: bladder pain, frequent urination, low back pain, and/or urgency of urination. Call or write: Jill Wood, P.O. Box 5363, Boise, ID 83705. (208) 345-1972.

From Silicone Scene: Alan and Jodi Katz have a support group called N.A.M.S. (National Association for Men with Silicone). In their recent newsletter, they report on the proposed Global Settlement, pointing out that as far as anyone knows, this settlement is for women only. They welcome all support, and promise to "bring the issues of men's silicone problems to the public". N.A.M.S., P.O. Box 64816, Chicago, IL 60664-0816.

A LITTLE HUMOR: Going one step forward and two steps back may be a good thing if you are going in the wrong direction.

TEACHINGS FROM THE AMA'S HANDBOOK OF MALE CHAUVINISM: From Silicone Sandi! 1) Women do not have diseases, they are diseases. 2) Menstruation and pregnancy are not normal biological functions. They are emotional strategies for trapping a husband and making his life a living hell. 3) Encouraging women to have silicone breast implants helps shorten the duration of alimony. 4) Since women outnumber men it is perfectly okay to classify them as lab animals. 5) You make more money on a sick woman than on a well one. 6) Always tell female patients it is all in their head so they'll keep coming back to disprove you ($$$$$$$$). 7) Write medical books so you can tell female patients not to read them. 8) Remember how well the defense of DES and Dalkon Shield drove them crazy and use the same tactics for silicone. 9) Refuse to remove the implants until they are extremely ill to help make money for your colleagues. 10) Implantation has the highest return on your investment, $2000 to $5000 to implant and $4000 to $15,000 for removal, plus all the other health care costs. 11) Be certain to document harmful and judgmental statements of silicone injured women. So what if you have only spent an hour with them. Words like grow up, it's all in your head, and other psychological problems will assist your colleagues in the legal arenas should they be sued. 12) Always insist that the psychological benefits of implants outweigh those of a women's health and well-being (refer to the Stepford Wives) or (They Shoot Horses, Don't They?). 13) I forget. 14) Last, but not least, if the AMA tells you to jump off a cliff, it is probably safe to do so.

One last note: The benefits of breast feeding with silicone outweigh the risks of nursing with silicone implants, says the AMA. In layman's terms, let's make money for pediatrics too?! Latest news headline: Dow researchers were split on the safety of silicone on the immune system, so Dow went with the side that makes the most money. They didn't even have the decency to flip a coin concerning our fate! Nice guys!

DISCLAIMER: The opinions expressed here are those of the editor and any contributors and are not to be construed as medical or legal advice. Any articles or information submitted may be edited because of space, content or grammatical errors.

COPYRIGHT: Our purpose is to disseminate information and provide support. This material is copyrighted so that we may retain control over content. You may reproduce this document as long as it is not done for profit and as long as no material, including copyright and subscription information, is changed.

DONATIONS: The Coalition of Silicone Survivors is a not-for-profit, tax-exempt corporation with over 4000 members world wide. Our editor, Lynda Roth, is a survivor having heard the dread word 'cancer' followed by the reassuring 'will look like a normal breast'. In addition to having helped start many support groups, Lynda has appeared before the FDA, congress members, national TV in the US and other countries and lectures internationally. Your donation will definitely help others receive information about the dangers of implants. IF READING THIS NEWSLETTER HAS HELPED YOU, AND YOU THINK OTHERS SHOULD HAVE A CHANCE TO RECEIVE OUR MESSAGE, WE URGE YOU TO GIVE GENEROUSLY. Donations are tax deductible in the United States. Yes, I want to help

As a member you will receive a highly informative information packet and this newsletter, including the CURRENT ISSUE for the next 12 months. Remember in the US it's tax deductible. Your help is critical.

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