September, 1994

Dear Silicone Survivors and Friends:

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 proposal.

From time to time, women ask me what they can do to help. On a national level, you can send any new information you receive to me so that I can make it available to others. I try to make a new list each month of information that is available. I need information on related disorders, such as Chronic Fatigue, Fibromyalgia, Scleroderma, Lupus, Chemical Toxicity, Rheumatological Disorders, Treatments, etc. We can also use donations of stamps, note pads, business envelopes (non-window), mailing labels, books on relevant topics (preferably recent), brightly colored 20 lb. paper, legal pads (small and large), large paper clips, carton sealing tape (clear), and, of course, $$ donations. On a local level, we need help with all aspects of keeping information flowing such as folding, stuffing, sealing, labelling newsletters and other mailed information (which needs to be done in my home, basically, because the time it takes to take it elsewhere usually needs to be given to other tasks.) I often have women say they can do some of this stuff if I will bring it to them. I wonder sometimes if they realize how many hours I spend in a day doing this job, usually at least 12, (but often more). I need help with filing, organizing, holding meetings in homes, etc. From all areas, we would like women to send their original poems dealing with the silicone issue for publication in the newsletter as well as information on meetings and other medical, alternative medical, legal, and pertinent issues. We can't publish everything, but we publish as much as we can. Now that you know what help is needed, let me know what you can do to help. Let your other group leaders know what you can do also. We can do a better job for all the women if more will offer to help.

APPEAL WON: As many of you may have heard, Mariann Hopkins won her appeal in the California Appellate Court. She is, however, still a long way from receiving the $7.34 million (minus attorney fees and costs, which will be over half of the total amount). They can (and undoubtedly will) ask for a rehearing. When that is denied, as it most likely will be, they can appeal to the US Supreme Court. When they refuse to hear the case, as they most likely will, then the companies have to pay up. It could be as much as two years before Mariann sees a dime. Still, this is a major victory, as it is unlikely that the opinion will be reversed at this time. Mariann is such a trooper. We all owe her a debt of gratitude for having the courage to battle this out and make all the information public about the dangers of breast implants.

FAIRNESS HEARINGS: Many of you have called to ask what happened at the hearings in Birmingham, AL. For those of us who have followed the MDL Hearings around the country, there was not a lot that was new. What was new is that we had an opportunity to directly address the Judge with our concerns. Judge Pointer reminded us a number of times that the only power he had as regards the class action at these hearings was to accept or reject it. He did say that he has the power to delay the September 16th deadline so that more women will have time to get their claims in. He also said that he has the power to extend the deadline to fix claims (which are essentially complete but lacking small pieces of information) to longer than the 30 days now allocated. He made is clear that he did not intend to extend the December 1st deadline for registration. Many of us detailed the flaws in this settlement package, especially the part about the lack of funds. He stated that the right to opt- out will never be taken away (I'm not holding my breath on this one). My appeal to Judge Pointer was to make sure that there is time for all women to get their claims in and to make sure that the process is fair to help prevent revictimization of the very women this suit proclaims it will help. I also made the statement about the lack of funds, among numerous other issues I brought up.

UPCOMING EVENTS: Women Against Silicone Poisoning (WASP) of Minnesota is having a National Breast Implant Conference on Saturday, October 1st in Bloomington, MN (Minneapolis). It will be held from 8-5 at the Crown Sterling Suites and you may reserve a room for $109 per night by calling (612) 854- 1000. Speakers will include Dr. Pierre Blais, Dr. Nachman Brautbar, Dr. David Smalley, Dr. Britta Ostermeyer-Shoaib, Karin and David Bunnell of Just Hold Her, and others to still confirm. Cost is $30 person pre-registration and $40 the day of the conference. If you would like information on the conference or would like to share a room, please call Sharon Phillips at (612) 422-2074 or Rita at (715) 262-3929.

The S.I.S. Dallas/Plano group meets every week on Wed., 12:30 to 2:00 at Disciples Christian Church, Park and Independence, in Plano, TX. Their regular monthly meeting are held on the last Thursday of each month as West Plano Presbyterian Church, 2709 Custer St., 7:00 P.M. For information on these meetings, contact Candace Rothrock, 3608 Sailmaker, Plano, TX 75023 or call her at (214) 618-0882.

SHARE (Silicone Healing and Recovery Effort) meets the 1st Wednesday of every month at 7:00 P.M. at Unity of Tallahassee, 1630 Crowder Rd., Tallahassee, FL. Contact Starlene Dunn (904) 386-5144.

LEGAL INFORMATION: Judge Pointer has approved the class action lawsuit (MDL- 926, AKA the Lindsey Lawsuit). In an attempt to make it fairer for the Foreign claimants, he has increased the amount they would receive, in total, to $96.6 million, up from $81 million. This is providing the current amount of $4.2 billion remains the same. If the amount placed in the settlement by the manufacturers increases, theoretically, the amount would then also increase for the Foreign claimants. Of course this is not enough, but then, is it enough for any of us who have been victimized by these defective products? Judge Pointer also extended the deadline for having medical documentation for their claims submitted to the Claims Administrator, although they still have to file by September 16th. How this will work out is unclear to me, but I assume you must file with the classification that you feel you will have by September 16th and then follow this up within the time frame of Oct. 17th by the documentation for that classification.

The manufacturers have until September 9th to back out of this deal. I don't expect this to happen! They know they have a good thing going! About 1000 women who initially opted-out of the settlement have now joined. This makes it an even better deal for the manufacturers because there are 1000 less private lawsuits they have to fight in court or settle out of court.

More than 90,500 have already registered with the class action. There is no current breakdown as to whether these women are current claimants or ongoing claimants. I expect that the number will swell to about 250,000 with the majority falling into ongoing claims and into Funds I-V.

If you have submitted your diagnosis for the grid and it just happens to be rejected by the committee evaluating your claim, you have 30 days to fix your claim (if it is substantially complete, with a few omissions). You can resubmit your diagnosis within 30 days after you initially send it in or, in the event the committee rejects your claim and bumps you to a lower category, you have 30 days at that time to "fix" your claim to prove that you belong in the category you are claiming. So, just because you have everything done and you feel you are all set, don't rest on your laurels. Keep collecting information. Keep your MD updated on symptoms and medical problems. Keep your attorney updated with all your medical records. Continue to have blood tests done if you are still having symptoms or if your condition worsens. These tests may help prove that you belong where you say you do in case the committee decides you should have a lesser diagnosis.

This advice is crucial if you mailed your records to the committee without having an MD place you on the grid. Your odds of receiving the diagnosis you feel you should are much less. Continue to collect records and go ahead and get a diagnosis by a certified medical doctor. If you get bumped down, you can resubmit this information to prove where you belong on the grid. It is not too late!! Get the tests from BALCO (800) 777-7122 or Immunosciences (800) 950-4686 that show what your abnormal blood tests are. Get the diagnosis from that qualified (board-certified) doctor.

The Court Claim Administration number for the MDL-926 Lindsey Lawsuit is (800) 600-0311. They are located in Houston, TX. This is the number to call for information on filing your claims.

GREEDY INSURANCE COMPANIES: Kaiser, Humana, Blue Cross-Blue Shield and over 30 other insurers have filed motions (which have been rejected) to intervene in the MDL Class Action against breast implant manufacturers. Plaintiff attorneys think they should seek compensation directly from the manufacturers instead of the women being harmed more by insurers trying to horn in on our small (very small) compensation amounts. To add insult to injury, the Justice Dept. is looking at trying to horn in on the settlement to recover monies from women on disability. Talk about robbing Peter to pay Paul! Just where do they think the women will go when their claim monies run out?? Right back to the disability rolls and to Medicaid/Medicare!! Talk about being penny-wise and pound-foolish!!

Ellen Mohney, who lost at her trial in Colorado Springs, CO had filed a notice of appeal. She has now requested that Judge Pointer declare her eligible for the MDL Settlement instead because the settlement "excludes only those implant claimants who have already received a final judgment".

CTN (Command Trust Network) would like to hear from you about your insurance company problems. Write to them with the name of the insurance company, how long you have been insured, and by whom you are covered. Were your claims denied or reduced, policy canceled, or new insurance requests refused? What breast implant related problems have caused you insurance problems? Forward your information to Sybil Goldrich at 256 S. Linden Drive, Beverly Hills, CA 90212.

MEDICAL INFORMATION: For those who read in last month's newsletter that DO's could not write reports for you for the grid, Judge Pointer fixed this and made it possible to use board-certified DO's.

Felbatrol, mentioned in last month's newsletter, has been recalled by the FDA.

Apparently Medicare has approved payment for Gamma-Immune IV treatment for Human Adjuvant Disease. This was reported to COSS by a reader who had it approved for her.

From PALS newsletter: Word is that the ASPRS is funding a study on fungal contamination of saline. Dr. Sumner Slavin of Harvard says that the early results show little or any incidence of contamination. Surprised? Sounds like a repeat of the Mayo Study (Science for Hire?)

Soybean Oil Implants: Also from PALS: We have all heard of the investigation of soybean oil for implants, now being used in trials. While wondering about what rancid oil would do while squirming its way through your body, let me give you some more "food" for thought. A Dutch potato-processing firm has been awarded a grant from their government to investigate how potato starch may replace silicone in breast implants. By using an all-natural filler in the implants, they theorize they will avoid the deleterious effects of artificial materials! I wonder what the shell will be made of, potato skins?

Update on Fibromyalgia (FMS): 30% of Fibromyalgia patients cannot hold down a steady job due to their chronic, unrelenting condition. FMS can be as disabling as rheumatoid arthritis. Sufferers describe the pain as deep muscular aching, burning, throbbing, shooting and stabbing. In addition to pain, which is frequently severe, and often debilitating fatigue, other common symptoms include unrefreshed sleep, irritable bowel, chronic headaches, morning stiffness, memory impairments, reduced coordination, and decreased endurance. It's like a very bad flu without the fever, only it is not temporary. Preliminary research studies indicate that 3-5% of the population (12 million Americans) have FMS. Eighty percent are female. The average FMS sufferer has an occasional decent day, rarely a really good day, and many rotten days. Out-dated theories suggesting that FMS is in some way caused by depression, anxiety, stress, or personality factory have been overturned by unbiased, well-designed studies conducted during the past decade. Little money is allocated by NIH (National Institute of Health) for FMS research.

Recent findings among FMS patients include these: 1) A low growth hormone secretion rate. This hormone is required daily (even in adults) to restore body tissues. Its absence may cause increased muscle pain. 2) An abnormal production of several neurotransmitters, including transmitters known to be involved in the regulation of pain. Neurotransmitters are chemicals produced by the brain and released at nerve endings to control a multitude of bodily functions, including sleep, pain, and mood. The spinal fluid level of substance P (a pain transmitter and vaso-dilator) is elevated three-fold, while the concentrations of serotonin, dopamine, and norepinephrine are significantly low in FMS patients. 3) Low blood serum levels of essential amino acids, including tryptophan. Tryptophan is converted to serotonin in the brain; serotonin is involved in sleep regulation, pain control, and immune system function. 4) Mineral imbalances. Preliminary findings indicate that red blood cell magnesium levels are low. Magnesium is an essential catalyst for producing energy at the cellular level and a lower concentration may contribute to a patient's symptoms of fatigue. Other minerals, such as zinc, also may be abnormally low. 5) An immune system dysfunction. Low levels of natural killer cell activity have been uncovered by separate laboratories. While the number of killer cells is normal, they are present in a dormant state (like guns without bullets). Natural killer cells represent part of the body's front-line immune defense, and their inactivity may in some way contribute to an immune system impairment. 6) An abnormal muscle cell biochemistry may exist. Reduced energy stores in the muscles and correspondingly poor oxygen supply have been found by one research team. It has been suggested that an enhanced susceptibility to muscle tissue injury may contribute to the pain of FMS. 7) Symptoms suggesting an association with other hard-to-treat disorders, such as chronic fatigue syndrome. 8) A documentation of the alpha-delta sleep anomaly that often occurs in FMS, and the impact of disturbed sleep on the body's hormonal and immunological functions. This sleep disorder can be observed on an electro-encephalogram (recorder chart) on which the brain waves, or spikes, characteristic of waking appear interspersed among the shallow rhythmic brain waves typically seen on the EEG recorder chart during deep sleep. As a rule, when FMS patients wake up, they feel unrefreshed--as though they had not slept. 9) Preliminary studies in the US and several other countries show the FMS is a highly prevalent and often disabling disorder that afflicts mostly women. The reported ranges are between 3 to 10% of the test population (meaning from 3 to 10% of the population suffers from FMS).

Suggested directions for research: 1) The neurotransmitters involved in pain control mechanisms should be identified and their role in FMS clarified. Drugs that are capable of reversing some or all of these abnormalities may provide patients with the most effective treatment and warrant aggressive testing. 2) Investigate the link between sleep disruption and the debilitating symptoms of fatigue, pain, and cognitive impairment. Several sleep disorders have been identified in FMS, such as the alpha-delta sleep anomaly, nocturnal myoclonus, restless leg syndrome, and bruxism (teeth grinding) because at least 75% of FMS patients have one or more of these sleep disorders based on objective electroencephalographic testing. 3) The role of genetics in the eventual development of FMS should be explored. FMS is known to run in families. 7% of school-age children meet the diagnostic criteria for FMS. 4) An aberration in the control of the hypothalamic-pituitary-axis (HP-axis), a part of the brain which plays a major role in regulating neurotransmitters, hormones, and immune system chemicals, should be explored in FMS. Abnormalities in the adrenal and thyroid systems, as well as low rates of growth hormone secretion, have already been reported in preliminary studies--all thought to be somehow related to problems in the over-riding control of the HP-axis. Modern brain imaging techniques, such as the SPECT scan, may help pinpoint areas of brain dysfunction and shed more light on HP- axis abnormalities. One pilot study has revealed blood flow distribution problems that likely stem from abnormal hypothalamic control. 5) The role of the immune system in FMS should be explored. Two separate questions need to be answered. (a) Is the low natural killer cell activity documented in FMS a primary or secondary factor in the development of symptoms? (i.e., is the origin of the problem rooted in the immune system, the neurotransmitter system, or some other regulatory mechanism in the body?) (b) Are infectious agents the cause of FMS or do they occur secondary to other factors that render the host more susceptible to specific infectious agents? 6) The association of FMS with other disorders needs clarification and may lead to an improved understanding of this syndrome's etiology. A high percentage of patients with auto-immune diseases, such as lupus, rheumatoid arthritis, and Sjogren's syndrome, and those battling certain known infectious agents (HIV and Lyme disease) develop FMS as well. Myofascial pain syndrome (a regional problem that involves radiating pain symptoms, or trigger points) is at least as common as FMS, if not more so. When the myofascial pain syndrome becomes chronic and body-wide, it is extremely difficult to distinguish it from FMS. Does a common pathophysiological mechanism underlie all these diseases? 7) What is the role of the muscles, ligaments and tendons in FMS? One of the most common sources of musculoskeletal pain, but often overlooked as such, is referred pain from myofascial trigger points. In this regard, what is the significance of the tender points and the trigger points? How do they relate to one another? When it comes to treatment, some patients claim that mildly exercising their sore muscles helps reduce their pain while others find that they must severely restrict their activities to minimize their muscle discomfort. NMR spectroscopy, an non-invasive technique that can measure biochemical changes within the muscles, might be used to evaluate patients during rest and during various levels of controlled exercise in an attempt to answer many of these questions. 8) What is the true prevalence of FMS in the US? At what age do the symptoms of this disorder begin to appear? Does the syndrome become progressively worse with age or does it stabilize with time? Are there any risk factors that contribute to the development of FMS such as prior history of sleep disorder? What other conditions co-exist with FMS and do these other conditions place patients at a higher risk for developing FMS?

This information is from the Fibromyalgia Syndrome Policy Group.

Chelation Therapy: This is a type of therapy you may have heard about in relation to silicone toxicity. There are some concerns about this type of therapy. One is that chelation therapy is for heavy metals and silicone is a light metal, like beryllium. Therefore, silicone cannot be chelated out of your body. However, the silicone in breast implants have often been contaminated with heavy metals so these may be chelate-able. Another concern is that any toxins that are chelated may then lodge in other parts of your body. We don't have an answer for this, but apparently there are procedures that would aid in helping all chelated materials in flushing out of the body. There has been a new chelating agent approved in the last few years for lead toxicity. It is called Succimer or Chemet, manufactured by Johnson and Johnson (McNeil Consumer Products Company, a subsidiary). Chemet chelates lead, aluminum, platinum, cadmium, mercury, and others, but not zinc. Since I had high levels of lead in my blood after my ruptured implant, I just wonder what these agents might do for some of us??!!

LABS: If you think you may have dermatomyositis/polymyositis, please be sure your lab test include CPK and aldolase as well as SGOT, SGPT and LDH (liver tests). It could make a great difference in where you land on the grid (class action). Be sure that whatever lab tests you do include the RnP antibody. Mine just showed up positive for the first time. This is the antibody that shows that you have mixed-connective tissue disease.

From time to time, we see information from Md's, other newsletters, and other sources that quote high prices for certain blood tests. YOU DO NOT NEED MOST OF THESE EXPENSIVE BLOOD TESTS!! All you need for the class action lawsuit are the basic tests done by labs like BALCO and Immunosciences. You don't need fancy tests like Detecsil or other tests that purport to look for silicone antibodies for a cost of from $200 to $400. You don't need to have your doctor run "a few tests of his/her own" because they just don't believe your lab work. This is B.S. I hear that the same type of panel (with perhaps even less tests) costs from $800 to $1200 in Florida. We need to band together as women with implants and refuse to be victimized by these high costs. We need our $$ for our own treatment, not for some MD to retest us to see if our tests are valid. Don't pay more than necessary for tests. Call BALCO at (800) 777-7122 ($340) or Immunosciences at (800) 950-4686 ($350). Get your blood tests done for $350 or less. You can have more tests done at reduced rates also, if you choose. We have been victimized by the manufacturers and often by our own plastic surgeons, let's not be revictimized by outrageous costs for blood work.

ALTERNATIVE MEDICINE: Some women are finding pain relief with DMSO (Pharmaceutical Grade). It is available at many health food stores. Some women use weekly IV DMSO (Pharmaceutical Grade, RIMSO for example) and find this is more helpful. DMSO is a free radical scavenger, anti-inflammatory, anti-oxidant, anti-bacterial, antifungal and antiviral and also blocks pain. It flushes toxins from your body. If you would like information on this form of treatment, write or call Dr. Stanley Jacob, 3181 SW Sam Jackson Park Road, Portland, OR 97201 (503) 494-8474. If you would like to speak to a woman who is utilizing this form of treatment, call or write Georgia Cillo, P.O. Box 315, Lake Oswego, OR 97034 (503) 697-7956. For a helpful book on this treatment modality, read: 'DMSO: Nature's Healer' by Dr. Morton Walker.

QUESTIONS & ANSWERS: Q. My attorney told me that I didn't need a diagnosis from a board-certified MD or DO. She said I could just send in my medical records and have the committee decide where I fit on the grid. Is this correct? A. In theory, yes. But for all practical purposes, your diagnosis just may not end up where it should by utilizing this method. The committee may have 100,000 (or more) women's medical records to go through and evaluate. Your odds of getting placed properly drop significantly by just sending in your records. I really can't imagine any attorney giving this type of advice unless it was just too late for you to find a doctor to diagnose you, and that would certainly have been after September 1st. It certainly saves the attorney time by not having to find a qualified doctor for you but it doesn't seem to be in your best interests. Q. I have had so much hair loss. My implants have been out for eight months now and my hair is still falling out. Is there anything I can do? A. Not that we know. Have hope, though, because my hair didn't begin to come back until almost two years after my last implant was removed. Some women have to have their scar capsules removed as well before any hair returns, so if your scar capsules are still in, think about having them removed. In any case, we are getting reports of full hair regrowth from some women and partial regrowth from others.

IMPORTANT: From Susan Boone of PALS: WHERE ARE YOU ON THE GRID? This is a question better left unasked! Many women do not care to make their placement on the grid public knowledge. There is a right to some semblance of privacy, although for many of us, it is long gone. Another problem with asking this question is that it gives rise to disagreements, resentment, anger and rumors. Already people are complaining about where so-and-so is on the grid and what they think of it. It doesn't matter! Nothing will ever be fair about this settlement for you or for me. Take what you get and try to get on with your life. Concentrate on receiving the highest placement that you legitimately can get, and forget about what another woman may receive. We need to be working together, not being jealous and resentful if another woman gets a higher placement.

PERSONAL COMMUNICATION: TO WOMEN WHO HAVE APPLIED FOR SOCIAL SECURITY DISABILITY: From Lynn Lynch, POSITIVE ACTION, 6410 Hwy 21 #42, Pt. Wentworth, GA 31407 (800) 707-2002 Access Code 202 or (912) 964-4120, FAX (912) 964- 1095 would like to have all women who have filed for Social Security Disability in the last two years and have been denied this benefit to contact her. She has been communicating with the Social Security Administration and they have agreed to review and analyze some denied and pending disability claims where the individual suffers from silicone poisoning. According to the Social Security Administration "We want to ensure that these cases were (are) properly evaluated." Lynn needs your name, Social Security #, current address and phone #. This is to show the numbers, and if the numbers are great enough, special criteria may be established for determination of disability benefits for individuals suffering from silicone toxicity, both in the future and to some degree in the past. All information sent to Lynn will be held in the strictest of confidentiality. The names will be reported directly to the SSA per their instructions and to no other persons. Local offices of the SSA will not be familiar with the review, only the home office. If you have questions or concerns, please call (912) 964-4120 only. The 800 # is to put you on the list to be included and is not to be called with questions or concerns.

TO WOMEN WHOSE ONLY SOURCE OF MEDICAL CARE IS THROUGH CITY, COUNTY, STATE, OR FEDERALLY FUNDED HEALTH CARE CLINICS: Please contact Jean Craig, 9601 Middle Fiskville Rd. #G8, Austin, TX 78753 with answers to the following questions. 1) Are clinic doctors you see sympathetic to implant patients experiencing IRDs (Implant Related Diseases), or do they deny the existence of such? 2) Have you experienced any difference in the way you, and/or your symptoms, were treated according to whether or not the clinic doctor knew you have/had a silicone implanted device? 3) Have you been told you needed surgery, or a special course of treatment, then been informed it wasn't necessary AFTER it was found that you have/had a silicone implanted device? 4) Have you taken medical records, from previously seen private MDs, to a clinic and had the diagnoses, recommended treatment, or previous doctor's opinion grossly disregarded? 5) Has any remark such as "The administration does not want to set any precedents in the care of indigent (or low income) implant patients" ever been made to you by your clinic doctor (or medical social worker, etc.) when you asked why your care or treatment was being handled in a certain manner? 6) Has any private doctor, to whom you have been referred by your publicly funded clinic for services not provided by the clinic, ever made any remark such as "I'm not spending any more time on you because I'm not getting paid for this."? 7) Have you found entries in your clinic medical records that contradict lab or X-Ray reports from their own facilities? 8) Medicaid or Medicare patients: Have you experienced any of the above problems and/or been denied coverage for removal of any silicone (including saline) implanted medical device or for treatment of physical symptoms associated with IRD's? 9) TO ANYONE WHO READS THIS: Would you be willing to help organize a nationwide campaign demanding that patients with IRD's in the care of government funded clinics receive medical care that is equivalent to that available in private clinics specializing in the care and treatment of IRD's? Also, we must insist that IRD patients be treated with the same respect and dignity extended to non-implant patients.

BRAS ACROSS GRAND CANYON: If you would like to help with Nicolino's project to string 10,000 bras across the Grand Canyon, here's a new idea. Have a bras across your backyard party. Everyone who comes must bring a bra for donation. Nicolino needs 5000 more bras (he has 5000) and this is a way to help with this project. Send your pre-implant removal bras to Nicolino, at Lasagna Sculpture Works, P.O. Box 274, Point Richmond, CA 94807. Call (510) 237-3939 for information on bras across the backyard parties or for information on Bras Across Grand Canyon. This project underscores the emphasis this society places on the human breast and how ridiculous that really is. One half of all cash donations to Nicolino, after expenses, will go to breast cancer action and other support groups like COSS.

A woman from the PALS group contacted me with this information: Someone from the University of Michigan contacted me regarding a study funded by Dow. She asked several questions and has since found out the following information. The Study is being called a woman's health study done by the School of Public Health or Institute of Social Research regarding Connective Tissue Diseases. It is a random poll of questions asked to women over the phone about auto- immune or connective tissue diseases they have been diagnosed with and later they ask if you ever had breast implants and if you have ever had problems with them. This is phase 2 of a 2-part study. They are contacting 2000 women for each phase. The first part was published at the University but Phase II will be published in scientific and medical journals (sounds about as scientific as the Mayo Clinic Study, right?) The following is the name and address of the overseeing MD: Women's Health Study, Dr. David Schottenfeld, Dept. of Epidemiology, School of Public Health, Room 1010, Univ. of Mich., Ann Arbor, MI 48109-2029. (800) 759-7947. You can call or write to protest the non-scientific basis of this study and the Dow funding (unbiased, right?) and the fact that research is now needed to help sick women, not to try to prove that they are not ill. The Plaintiff's Steering Committee (MDL-926) has been trying to get a copy of the 1st study and has been told that it is privileged information. This information is undoubtedly being sought to help Dow and other manufacturers win their court cases against sick women.

"I would like to know if other women have been diagnosed with calcium deposits in a shoulder. What treatment has helped? Is there information on its connection to Breast Implants?" Diane McWilliams, SPA, P.O. Box 965, Eldridge, CA95431.

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

Did you know that Victor Conte of BALCO Labs used to be the bass guitar player for the rock group Tower of Power? Take out your old tapes and records and look for his picture. He also played with Herbie Hancock. Victor just had a fire at his home in Northern California. Keep him in your thoughts and prayers.

It worked for her! For info on Systemic Detox Prog. send $5, SASE to Carol Ann Young, RN, PO Box 1448, Florence, OR 97439.

Joan would like to hear from any women who are having heart problems. If you have arrhythmia (alteration in rhythm of heart beat in time or force/irregular), tachycardia (rapid heart action), have been diagnosed with Mitral Valve Prolapse, or are seeing a cardiologist, please drop me a line and if possible include copies of any records you think might be helpful. We know the heart is a muscle and silicone has caused us to have muscle diseases. We also have demyelinization of our nerves and the heart has many nerves. If you know of doctors working on this, please let me know who they are. (If you have had episodes of sleep apnea (pauses in your breathing), please include that in your notes. Contact Joan Rice, 8505 Warde Terrace, Potomac, MD 20854 (801) 365-0188. I would prefer that you contact me by mail.

Joan Rice would like to hear from women diagnosed with vonWillebrand's disease (a bleeding disorder) or, if you have serious bleeding problems, diagnosed or undiagnosed, particularly associated with menstrual periods but not limited to this). Contact Joan Rice, 8505 Warde Terrace, Potomac, MD 20854.

Joan Sharlin wants to hear from women who have trouble healing after surgery. A month ago she had surgery to remove a scar capsule left in after explant surgery and her incision is still not healing. Please call or write to: Joan Sharlin, 5225 Pooks Hill Rd. 926N, Bethesda, MD 20814 (301) 493-8413.

Barbara Herzog wants to hear from women who have brain tumors. Please write of FAX to Barbara Herzog, P.O. Box 226, Lakeville, PA 18438. FAX (717) 226- 0445.

OPEN LETTER from Susan Boone of PALS: Since I have come to a crossroad with the breast implant situation (Regrettably, Susan has backed off because of her health, the lack of commitment of group members, and the back-stabbing of a few), there are some things I want to get off my chest besides silicone! Since this newsletter is copied for many support groups across the country (with my blessing), I want to address these remarks, not only to PALS, but to all women with implant problems.

The support group leaders, and others helping to lead the way, are VOLUNTEERS who have the same problems that you do. They are giving up their own valuable time, which is not compensated by a salary. No one can begin to understand the time spent in trying to help others.

A problem across the country is money. These leaders are expected to foot many bills as well. Women are having financial problems, but too many are reluctant to pay for the valuable information the leaders provide them. At our last meeting of PALS in June, I collected $64.00. That did not even cover the cost of copying of the June newsletter, besides the postage of approximately that amount. Thanks to others who mailed in contributions, I was able to cover the costs to get them out. But what about other costs involved? It takes AT LEAST a week to do a newsletter like this. Have you ever stopped to think of where the information comes from? Each support group leader has to educate herself. In my support group, I pay for all subscriptions, donations, books, packets, tapes, or silicone seminars myself. Although some support groups do contribute to an education fund, we have not had the money to start one. At the next meeting, look at all the handouts and information available to you. It doesn't just appear. Someone had to stand at a copy machine and pay for the cost of those pieces of paper. Count the stacks of paper that you have accumulated and multiply that times five to ten cents. Someone has also spent hours reading, making copies in a library, talking on a phone, or writing away for that information.

When new women call, they are always sent information. Many never bother with a donation. Checks bounce with $5 fees, or more, attached. Many calls require long distance charges, and the cost of gasoline doesn't come cheap. But there are many rewards beyond what money can buy. That's why we do it!

So where does the real frustration come from for a support group leader? From the rumors, the lack of cohesion and support, the lack of participation, the ingratitude, and the people with private agendas that often work against the group. Unless women are united in our cause, we will not prevail. We can't fight the politics of the manufacturers and plastic surgeons and the legal and insurance aspects unless we are a united front. We are too sick to do battle with our own sisters as well.

Work with your leaders, not against them. If you have a problem, go to them instead of starting rumors. If you think your donation is being used inappropriately, ask your leader where the money goes. Teamwork is the answer. If you want to pull some cute trick behind the leader's back, think again! YOU may just be that last straw that breaks the camel's back!

COSS COMMENT: AMEN!! Thank you, Susan! I'm glad that there are some of us out there trying to bring unity to this cause. Those who have private agendas, spread rumors, pull dirty tricks, and cause dissention will never admit that they are the problem. But, others do not have to listen or play the same game. Turn a deaf ear to these malcontents and offer to help your group leader. We're all in this together!! WE CAN'T DO THIS WITHOUT YOUR HELP! If you want that meeting, that newsletter, or that help on the phone, if you want your group leader informed and up-to-date on information, do everything you can to help. If you can, make a donation. If not, offer time and help with whatever needs to be done. There are thousands more women who will need help as the next ten to twenty years pass. The fight is not nearly over. PLEASE HELP and if you cannot help, PLEASE do not be the malcontent that is the straw that breaks the back of your group leaders.

A LITTLE HUMOR: As someone said to me when I was hurrying to get to a meeting: "It's better to arrive late in this world than early in the next one." Something to ponder on when you are rushing to make it somewhere and perhaps driving a little too fast!!

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

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