June, 1995

Dear Silicone Survivors and Friends:

My trip to New Zealand was informative. I am astounded that their national health insurance has discontinued paying for removal of breast implants, causing the women there to have to come up with all the funds for this necessary surgery. This is the only country I have found where this is the case. They need to make the public aware of this form of discrimination and put pressure on them to do the right thing. Many of the women there were unaware of the necessity to remove the entire scar capsule. We showed the Baxter Gentry documentary, which they found informative. The women were warm and friendly and greatly appreciated the information that I brought to them. I hope we can continue to help them and women in other countries with issues around breast and other silicone implants.

The conference in Washington, DC went well. Tapes are available for $95.00 for the 2-day session. These were professionally taped and will be of excellent quality. They are also available in the PALS system for Europe, N. Z., and Australia, etc. for $115.00 US Funds. See order form at end of newsletter.

I have been traveling a lot and have been quite exhausted and ill because of this. If I have not answered your call or if there has been a delay in filling your request for literature or materials, that is why. I was gone about 4 of 5 weeks, but am now home for most of June and at least half of July.

Many women ask me what they can do to help. I think we need to set up a fund for women who have no insurance and no money for explantation. We could have women who would be good at fund-raising activities speak with members of corporations who have funds that they annually donate to charitable causes. This would be a rewarding and valuable service that we could provide.

If you are interested in becoming involved in a boycott against Dow Chemical, please contact Judy Gervais at (619) 287-5548 or Louise Romans at (407) 699- 0849.

Like all groups, we function with your assistance. We need your help with funding. Getting the word out to other countries is expensive (not to mention tiring). Mail to other countries costs almost triple as mail sent in the US. Other countries have not had the benefits of all the information that have been available in the US. If you can send a donation, please do. Remember, we are non-profit and tax-exempt, so your donation is tax deductible.

UPCOMING EVENTS: In Florida on June 10th, 1995 (Saturday, 9-5), there will be a conference in Tampa. Featured speakers will be Dr. Frank Vasey, Dr. Marguerite Barnett, Dr. Michael Cichon, and Dr. Pierre Blais. Cost is $20.00. Make check payable to Florida Women's Network, P.O. Box 1055, Gainesville, FL 32602-1055 or call (904) 462-0516 for more information.

There will be a National Conference on breast implants in Ontario, Canada on October 28, 1995. Scheduled speakers include Dr. Pierre Blais, Dr. Steven Edworthy, Michael Eizenga (atty), Dr. Lu-Jean Feng, Dr. Eric Holowaty, Dr. Rahim Karjoo, Dr. Aristo Vojdani, Dr. Nachman Brautbar, and others to confirm. This conference will be held at the Sutton Place Hotel, 955 Bay Street, Toronto, Ontario, Canada. Reservations at the hotel are $125.00 per night for 1-4 persons. Tell them you are with the Breast Implant Line of Canada Conference. Advance registration for the conference is $85.00, at the door, $110.00 for individuals and $160.00 advance for couples and $200.00 at the door. Advance registration must be received by Sept. 15, 1995. Mail to Breast Implant Line of Canada, c/o Joyce Attis, 56 Touraine Avenue, North York, Ontario, M3H 1R2. Videotapes of the conference may be ordered in advance for $49.50 or at the conference for $59.50. No orders for videotapes will be accepted after November 15, 1995. Call (416) 636-6618 for more information on this conference or on the Breast Implant Line of Canada.

In Florida, there is a breast implant support group every Wednesday morning from 11:00 A.M. to 12:30 P.M. at Leawood Center 1417 N. Semoran Blvd., Suite 201, Orlando FL 32807. Call 282-3660 for directions.

LEGAL INFORMATION: Class action lawsuit: Well, as most of you have heard by now, Dow Corning applied for Chapter 11 Bankruptcy. Many of you saw the full page ads that I hear were placed in 17 newspapers (I wonder how many explantations that would have paid for?) What does this bankruptcy mean to those in and out of the class action? We're not sure about all of the ramifications. What do I think it means? Well, there are a number of things that cross my mind. Dow wants all the women who opted out back in the class action. Will that happen? It's a strong possibility! I think that Judge Pointer will either open up the class action to those who opted out can come back in and/or he will make the class action mandatory for all of us. What will happen with the class action? The funds will probably be available for the class action as per the agreement, it just make take a little longer (but I never expected payment before 1997). Dow Chemical may have to participate and put in a large sum. I think that we will get a settlement. I still think it will be around 10% of the grid amount or even less. I think 25% is highly optimistic. I received a letter from one subscriber who was very unhappy with information in my last two newsletters regarding the small amounts I thought we would receive and my advice to think very carefully about opting-out because of the possibility of bankruptcy. To those who find this upsetting I would say, think how upset you will be if you plan on getting a million dollars and they offer you $75,000 or less. If you plan on $25,000 and get more, you will be much happier that if you plan on a million and get much, much less. We have to lower our expectations to be in line with the reality of the situation in which we find ourselves. Instead of focusing on the legal issues, perhaps we should all focus on how to get better and let the legal issues take their course. This doesn't mean we shouldn't still fight for what is right, but it means that it shouldn't be our top priority.

Approximately 137,500 women registered for the current claimant status. Not all of those women will meet the qualifications for the current disease compensation grid. If 35,000 women actually did make it on the grid (and we know there will be many more than this), it would mean an average of less than $35,000 for each woman at the current funding for MDL-926. We need at least $20 billion to fully fund the class action as it now stands if around 100,000 women actually find that they are placed on the grid. We all know that there is no $20 billion to be found, even if some of the manufacturers do put more in the fund to take the pressure off Dow Corning and if Dow Chemical contributes a sizeable amount.

MEDICAL INFORMATION: Dow Corning's Removal Assistance Program has expired. If you did not apply for the funds by May 11, 1995, it is now too late. If you have applied and have not yet been approved, I am not sure just what the bankruptcy they applied for will do to this program.

We continue to hear that some surgeons are not removing the implants intact with scar tissue unopened. Please question your surgeon carefully to see that they are being removed correctly. You are paying for this procedure, whether it is through your health insurance or any other method of payment. Speaking of paying, one of the best plastic surgeons in the country is here in Denver and she removes implants with scar capsules intact, is empathetic, and does the procedure for $3800 (inclusive of hospital and anesthesiologist). Don't pay more than you have to for this procedure, especially if it is coming out of your pocket. She does not take liens on your settlement.

Hair loss or alopecia: This occurs in varying degrees and in different forms. One form is called telogen effluvium, which is a sudden temporary hair loss cause by acute illness, surgery, stress, pregnancy, cessation of birth control pills or ?? Usually it grows back within a few months. Another form is alopecia areata. This is when hair falls out in patches. There may just be a few bald spots. Another form is alopecia universalis. This is when all the body hair falls out, including eyebrows, eyelashes, pubic hair and hair on arms, legs, under arms, etc. These two conditions can be caused by any number of diseases. The wider the area affected, the more pessimistic the prognosis (but, I lost all body hair except for about half the hair on my head, and much of it has come back). If the hair is lost during the growing stage (anagen effluvium), this is usually the result of drugs or other medical treatment (breast implants?). Hair usually grows back. Chemical or physical treatments can result in hair shaft abnormalities. Skin diseases that affect the scalp can cause hair loss. Metabolic disorders caused by starvation, iron deficiency, blood loss, diabetes, and thyroid disease can also cause hair loss.

STRESS: Good stress, bad stress, what does it all mean? Is it stress or distress? Our own perception of what is stressful is what is the most important. Stress is in the eye of the beholder. When you have control over a situation, you don't often have severe stress symptoms. Stress is an undesirable impact on the physical, mental or emotional health of an individual.

What causes stress? Bad stress is loss of control of a situation, unpredictability, high intensity (for many), rush jobs, running late, fear of bodily harm, etc. Fear, uncertainty, and doubt create situations where distress is common. Change is one of the most common stressors. Environmental pollution is a form of physical stress that we all encounter. Threats of physical violence, nuclear annihilation, food shortages, economic disaster, etc. all have an impact. Nutrition can be a big factor. Illness is another important factor in stress. Bad stress contributes to disease, physically and psychological. Good stress can be from new, interesting, challenging experiences, such as travelling to a new city for a vacation. Good stress is a challenge, a new job (usually), predictability (knowledge of what will happen), lower intensity situations, known deadlines, lower noise levels, etc. You have control over what happens.

Consequences of high stress (distress) can be numerous. When the brain perceives stress, it initiates a series of complex signals to the neuroendocrine system. Stress is associated with flight of fight responses and causes a release of ACTH (adrenocorticotrophic hormone) which stimulates the adrenal glands to pour out corticosteroid hormones and epinephrine. The pulse quickens, muscles tense, blood pressure rises, palms sweat, hearts pound, the senses sharpen, anxiety sets in, and the body prepares to fight or flee. Sleep disturbances may occur, tension headaches, migraine headaches, feelings of worthlessness, overwhelming feelings of responsibility, tearfulness, and other symptoms may also occur. If this situation occurs often and we don't have control, physical disturbances or psychological problems occur. Rises in the level of cortisol, epinephrine, and testosterone, when they occur consistently, may lead to disease. Cholesterol levels rise as well as other blood lipids. Tightness in the intestinal muscle, can, in time, contribute to the formation of ulcers. Contractions in the bowel, bronchial, and nasal areas can occur. Higher blood pressure can occur. The immune system can be depressed. Alcoholism increases, as does drug abuse, overeating, smoking, immersion into cults, and self-destructive behaviors such as suicide. Depression and some mental illnesses can be attributed, all or in part, to stress.

For women, who have been told that they could have it all, juggling their many roles can be quite stressful. We have not been supplied with the societal and institutional supports that we need to accomplish these expectations. Conflict and stress occur when we see the gap in our expectations and the reality of our lives. Unreasonable personal expectations are one of the most common stressors for women in our society. We cannot expect to excel in all areas of our life simultaneously. Trying to be super-woman may actually be killing you slowly. The trick is to change our attitudes and lifestyles, not take a pill for the symptoms that are created by the stress. An awareness of what is causing the stress is the first step in correcting it. When the stress in our lives outstrips our ability and resources to handle it, we become unbalanced.

Ask yourself: 1) What tasks are causing the most pressure in my life? 2) Can I reduce, reorganize, or eliminate these tasks? 3) Which pressure producers must I keep and which ones can I realistically unload? 4) Are there ways to reorganize my responsibilities so that I am not overloaded by other people's expectations? 5) Can I share the pressure with my family or work-mates by delegating tasks, or by saying no to less important demands? Instead of asking yourself 'Why can't I manage better?', ask yourself 'Why isn't society contributing more?' and 'How can we change the institutions around us to become more flexible and responsive to our needs?'

Personality types and stress: Type A and Type B personalities may react differently to stress. Type A is driven to perfection. She always tries to do more than one thing at a time and is impatient with slowness in others. She competes in situations that do not call for competition. She is likely to have difficulty setting priorities, giving equal importance to career, family, marriage, and home, which results in enormous pressure and feelings of guilt and overload. Type B personalities are more relaxed, less competitive, and not so driven by time and the need to succeed. Type A's are more susceptible to heart attacks and other diseases. Type B's apparently handle stress better than their more driven counterparts, Type A. Type A women are more likely to turn their anger inward (depression) and they may act excessively polite while hiding feelings of hostility and anger.

Post-Traumatic Stress Disorder (PTSD): Extraordinarily stressful events may create a syndrome called PTSD. Persons who have been through wars, witness a gruesome accident (or are in one), have been raped, or have had other stressful events (years of trying to find a doctor who believes you are truly ill and do not need a psychiatrist while your health was declining) may find they have this syndrome. It occurs in varying degrees and symptoms may not occur for months or years after the event(s). Symptoms are irritability, depression, difficulty relating to others, and difficulty handling even normal amounts of stress. Being easily startled is one symptom; nightmares and flashbacks of events is another. There are 4 phases in this disorder: 1) Recognition of the experience and the nightmare it has created. 2) Denial and numbness. 3) Oscillation between numbness and repetitive memories of the event(s). 4) Coming to terms with the event(s). Sometimes the event is so painful that it causes a complete conscious memory loss of the event(s). Therapy often is the only method of recovery from PTSD.

Some helpful techniques for stress reduction: 1) Psychological treatment, utilizing stress management treatments and therapy to effectively reduce extremely high unrealistic expectations of ourselves. Therapy can help in many ways. 2) Relaxation training. 3) Biofeedback training, including visualization and guided imagery. 4) Social support, which is extremely important. Women with implants have found that support groups have been one of the best ways to handle the stress of their situations.

Positive approaches to stress: Capitalize on stress if it is a healthy motivator for you and provides direction to new and rewarding challenges. Try to develop skills to manage stress if it is a negative factor. Try these strategies to cope with stress: 1) Know and recognize your specific stress and distress symptoms. Listen to your body. 2) Develop your own stress monitoring techniques. When you feel symptoms coming on, take care of yourself. Decrease social obligations and exercise more. 3) Eat healthful foods (avoid sugar and fats). Get enough sleep. 4) Participate in activities rather than isolating yourself. Isolation can be a big factor in depression and other problems. 5) Prioritize your responsibilities. Make a check list of duties and check them off when completed. Reward yourself for your accomplishments and then relax. Don't try to do everything! And, most importantly, don't second-guess the choices you have made. 6) Accept your imperfections. Trying to be perfect in everything is unrealistic and stressful. 7) Avoid self-medication, whether alcohol, drugs, prescriptions drugs, food, cigarettes, or too much caffeine. These do not eliminate stress and indeed may increase stress later. 8) Learn stress reduction skills. If you practice a skill for 21 days, it more easily becomes a part of your life. When you find a skill that works for you, practice it regularly until it becomes a habit. 9) Consult a health care professional if you find that your life stresses feel overwhelming.

Another list of coping strategies: 1) Immediately seek human attachment, even of a transient nature. 2) Regulate the time and amount of stressful information reaching you. Allow the information to slow down to a level where you can handle it. 3) Deal with one problem at a time, even if there are three or four that demand handling. 4) Seek information relevant to the problem from a variety of sources. Create alternate strategies for coping. 5) Concentrate on your expectations for the future, not on opportunities lost in the past.

This information is from several sources, among them the National Women's Health Report on Stress (1993) and The Columbia University College of Physicians and Surgeons Complete Home Medical Guide.

ALTERNATIVE MEDICINE: Stress is a factor in 70 to 80% of all visits to physicians. Stress can be defined as a reaction to any stimulus or interference that upsets normal functioning and disturbs mental and/or physical health. It can be brought on by allergic reactions, poor diet, nutritional deficiencies, substance abuse, or biochemical imbalances in the body. Alternative medicine treatments for stress include meditation, guided imagery, biofeedback, yoga, and qigong (qigong combines movement, mediation, and breath regulation to enhance the flow of vital energy in the body, improve blood circulation, and enhance immune function.). All these therapies have one thing in common, they facilitate deep relaxation and reduce stress. Dietary changes, herbal medicine, Ayurvedic medicine (a comprehensive system of medicine that combines natural therapies with a highly personalized approach to the treatment of disease), and Traditional Chinese Medicine.

Life experiences shape behavior. How experiences are handled often affects our ability to deal with stress in the future. It is important for everyone, including children, to learn effective coping skills when dealing with stressful stimuli and events. Emotional imbalance results when this does not happen, and this affects the biochemistry of the body, leading to psychological and physiological problems.

Mind/Body Medicine: Chronic stress can contribute to illness, and relaxation, positive ways of coping with stress, and restoration of integral physical and mental/emotional functioning will improve one's health. More important than the stressors themselves is the person's ability to cope with them. If, as the science of psychoneuroimmunology declares, there is a psychological process that is conducive to the development of chronic disease, then there is a corresponding psychological process for recovery. Feelings of security, coupled with the ability to cope, counters negative emotions that can interfere with healing, compromise the immune system, and encourage cardiovascular disease. Overambitious goals and personal objectives which exceed one's experience and skill are a common stressor. Measuring the benefit of performing a stressful task to determine if it is worth the involvement is one way to measure it's worth. Time management is a stress reduction technique.

Meditation is a safe and simple way to balance a person's physical, emotional, and mental states. It is easily learned. Meditation is any activity that keeps the attention pleasantly anchored in the present moment. When the mind is calm and focused in the present, it is neither reacting to memories from the past nor being preoccupied with plans for the future. Meditation is so effective that the National Institutes of Health, in 1984, recommended it over medication as the first treatment for mild hypertension (high blood pressure). Meditation can reduce pain, help heal ulcers, and promote healing from many diseases such as diabetes, cancer, chronic diarrhea, etc. Meditation has also been shown to have a positive effect on immune functions and in strengthening the body's defenses against infections.

Biofeedback training teaches a person how to change and control his or her body's vital functions through the use of simple electronic devices. It is often utilized along with other relaxation and stress-reduction techniques. With this technique, you can learn to voluntarily relax muscles, alter the brain's activity, reduce blood pressure, increase body warmth, and improve gastrointestinal functioning.

Guided Imagery is a method of utilizing the power of the mind to evoke a positive physical response. It is comfortable and pleasurable. Recalling a time when you felt relaxed and peaceful, imagining being there, focusing on the sights, sounds, smells, etc., and then noticing the feelings of peacefulness and relaxation are parts of this technique. This technique can increase immune response, reduce blood pressure, control pain, help with weight reduction, or help with feelings of anxiety or depression.

Yoga is one of the oldest know systems of health. The physical postures, breathing exercises, and meditation practices can produce healthful energies. Yoga is the union of the physical, mental, and spiritual energies that enhance health and well-being. It is well known that yoga reduces stress. The yoga belief that when the mind is restless and agitated, the health of the body will be adversely affected is behind this practice. Yoga can reduce blood pressure, improve immune functioning, reduce stress and anxiety, alleviate pain, help with recovery from addictions, improve memory and motor skills as well as improve metabolic and respiratory functions.

Qigong combines movement, meditation and breath regulation to enhance the flow of vital energy in the body. It can improve blood circulation and enhance immune function. It reduces stress. It can improve muscular strength and flexibility and reverse damage caused by injuries and disease. Increased energy and tissue regeneration can be the result.

Diet and Nutritional Supplements can combat many dietary and environmental stress related problems. If you suffer from stress, you should avoid caffeine, food additives and preservatives, and sugars. Stick to fresh, whole foods high in complex carbohydrates, moderate to low in protein, and low in fat. Less than 2% of the diet should come from sugars, and those should come from fruit, not fruit juice or any other sugar. Stress increases the likelihood of maldigestion and malabsorption, and causes vitamin deficiencies. Vitamin B6 is rapidly depleted when we are stressed. Hypoglycemia is a stress-related disorder that can be changed by diet.

Exercise is known to reduce stress. Over-exercising can increase bodily stress. 20 minutes of walking at a good clip, bicycling, or other aerobic exercise at least three times a week is a minimum required exercise. Swimming is good for persons with joint problems as it reduces strain on joints. Nordic Track and other exercise equipment can be just the ticket, as it allows for year-round access to exercise equipment and less excuses for not exercising.

Herbal medicine has stress reducers also. A hot cup of chamomile herbal tea is one method. It calms stomach acids and has relaxing properties. It is an anti-inflammatory and anti-spasmodic. Passion flower is another herbal treatment. American Ginseng can help support the body during stressful times. It is called an adaptogen, because it helps your body to adapt and be more prepared and resistant to everyday stresses. Consult a Naturopathic Doctor or Nutritional Counselor for other tips on reducing stress.

Traditional Chinese Medicine treats stress with acupuncture or acupressure and herbs to help balance the body's energies and relieve tension that constrict the functioning of the body. Herbs such as astralgus, ligustra and ginseng are commonly used. This treatment can reduce pain and stress and help the body function in a much better way.

Ayurvedic Medicine treats stress by looking at four areas, consciousness, physiology, behavior, and environment. Body type may help determine treatment. Transcendental Meditation is utilized. Dietary changes include avoiding stimulants and eating whole foods. Daily massages with sesame oil may be part of the treatment. Behavior modification changes may be necessary. Environmental changes may be necessary. Keeping the regular daily schedule as free of stress as possible is the goal.

Much of this information is from Alternative Medicine: The Definitive Guide.

IMPORTANT: If you have any evidence of implants being re-implanted, here or in foreign countries, please send any documentation to me. This information is being requested by some FDA members. Do not send it to the FDA, send it to C.O.S.S. so we can be sure it gets to the right persons.

If you are going for an appointment for Supplemental Security Income, Social Security Disability, Aid to the Needy Disabled, or for any disability program, please do not rest up and try to look your best. Go the way you usually are. You are trying to show them just how you really are on a daily basis, not how you are when you rest up for a week. Try to do several days of normal work or whatever you do and go in and show them just how debilitating that is for you. Don't wear makeup to cover the dark circles, the skin blotches, etc., etc., etc. Don't rest up to do tests. Do the same thing for tests as for your other appointments. Go in the way you would be if you tried to live normally. Let them see you at your worst, not your best. This is essential if we are to have our disease recognized and if you are to receive disability.

Vocational Rehabilitation has paid for a few explantations for women who had no medical insurance and sincerely wanted to go back to work. Call Barbara Stock at (407) 629-8791 for more information on this. Voc. Rehab. is a state agency which provides medical care and training to make you employable. Check your phone book for the phone number.

C.O.S.S. has a book available on how to get Social Security Disability or Supplemental Security Income. It is $10.00 plus $2.00 shipping and handling. The price has increased because printing costs have doubled in the last 6 months.

Remember, don't give blood. If you have silicone antibodies and your blood is given to a woman that is silicone sensitive, it could create a serious health problem. We also have other antibodies that could be harmful. We have high levels of some toxic metals from the implants also. It is probably best to let those who have never had any type of silicone implantable device give blood.

Jill Stone has bumper stickers that say: FAIR PLAY: DOW CHEMICAL PAY. These are available at 2 for $5.00 (please send a SASE-legal size). She also has buttons that say: CORPORATE GREED (with a line through it). These are also available at 2 for $5.00. Send a small padded envelope with $.52 postage or include that much extra for postage. Send them to Triad Silicone Network, P.O. Box 7631, Greensboro, NC 27417.

INFORMATION AVAILABLE: Baxter Gentry's wonderful documentary is available for $39.95 plus $4.90 shipping and handling US, and $49.95 plus $12.00 shipping and handling (US Funds) for foreign countries (PALS system). When the women at Washington, DC saw it, they loved it. Many picked up order blanks for it. Call (800) 449-8143 for ordering information. I think we should work on getting something like this on every public television station. This is something else that women can do that wish to be involved in our organizations. What a valuable service this would be to those out there who just don't know what is causing their health problems or those who think they have no problems or will never have a problem from implants.

PERSONAL COMMUNICATION: From Lynda, a little food for thought. We have had many national conferences now and have learned a lot from them, both in information presented and in how to put on a conference. What I think most of the group leaders have learned about putting on a conference is that it costs a lot. I personally have learned from other's experiences (as well as my own) and I think there are a few pointers I could share with all of you. 1) Don't choose an expensive hotel or meeting place. Women cannot afford the conference and cannot afford the rooms at an expensive hotel. 2) Don't order expensive food. Make the meals simple and reasonable in price (continental breakfasts with muffins and some not-too sweet choices and buffet lunches, if possible). Choose food with no additives and preservatives and make sure you have a vegetarian choice. Otherwise, choose a meeting place close to many restaurants and let the women and other attendees go out for food. 3) Don't make extensive amounts of copies and literature to hand out or sell. Figure that no more than 20% of attendees will purchase any individual item. 4) Don't overestimate attendance, if anything, underestimate it and change and increase at the last minute. It's easier and cheaper and you don't get into as much trouble with the hotel. 5) Have a hospitality suite that women can utilize during the entire conference, including the evening before and the evening after the conference (for those who stay in town). Hotels often provide these free of charge. Negotiate. 6) On the subject of negotiation, do this! Most hotels want your business and will negotiate prices. Check with a number of them and make them compete for your business. 7) Try to have your meeting in a location just off a main road so that attendees can find it. 8) Don't spend excessive amounts advertising your conference. Radio and TV stations will often do public service announcements if they receive the information at least two weeks ahead of time. Newspapers have monthly meeting calendars that will often include your event if they receive it in plenty of time. Let all group leaders know about your conference and ask them to inform their members. Let the newsletter writers know about your conference. Ask them to announce it to their members. Flyers placed on community bulletin boards and in shop windows often are effective. Ask your attorneys to let all their members know about your meetings and conferences. Utilize all free methods available to you. Do send a conference registration packet to all your members. 9) Set aside sums for scholarships for those who cannot afford to otherwise attend. Some presenters are willing to give a small stipend for such a program. Don't be afraid to ask. 10) Be careful not to over-plan, many conferences only have around 100-130 attendees. 11) Don't buy expensive do-dads and fancy decorations. Don't spend extras on fancy name tags or other items. Call upon your members to make decorations and donate items for your use. 12) Get help from your members to plan, put into action, and get through the conference. You will quickly learn why I say this if you try without their help. It is a full-time job to plan a conference, even with a lot of help. I thank God for all the help I had, and I was exhausted and ill for some time after my last conference. 13) Be sure that you have all the latest books, tapes, videos, and literature for sale so women can continue to educate themselves after the conference. Try to have booths on products that help the women. 14) Have new and different speakers that will share information not before heard. 15) Be prepared to shuttle some members and speakers from the airport if the hotel does not have a shuttle service. Remember, some women simply cannot afford taxies or other forms of transportation. 16) A conference usually takes several months of full time work to plan. Think all this over and then decide if you still want to attempt a conference. Get advice from others who have had them before you start to help avoid mistakes that we all have made.

Scleroderma: If you have Systemic Scleroderma, intermediate or CREST (limited), or know someone who is a breast implant recipient who does, please contact Dr. Carlos Pinilla. He is trying to dismiss all this nonsense that there "is no scientific proof that silicone has harmed anyone". He estimates that there are probably 1000 to 2000 cases of scleroderma among breast implant recipients. You would usually find 40 to 50 cases among 1 million women in the general population. If you have tightening of the skin around your fingers and a diagnosis of Mixed Connective Tissue Disease, I don't think this is officially scleroderma.

Once Dr. Pinella has located several hundred cases, enough to be impressive, he will submit an article for publication in a medical journal. No one seems to believe it unless it has been published in a medical journal. Dr. Pinilla has already been in contact with leading doctors who treat breast implant patients, support leaders, etc. Address: Dr. Carlos Pinilla, 9275 S.W. 152nd St., Ste. 202, Miami, FL 33157. (305) 255-9577.

Jane Medina would like to hear from silicone survivors who experienced onset of Hashimoto's Thyroiditis after implantation and if any of those women have ever had a diagnosis of aseptic meningitis also. She would like to hear from anyone who experiences great relief from mental lethargy and bone pain when on antibiotics. Contact her at 783 S. York St., Denver, CO 80209. (303) 556- 3620.

Barb Johnston would like to hear from anyone who has had thyroid cancer after implantation. She had breast cancer at 34 yrs. of age, silicone implants, now thyroid cancer at age 44. If you know of a connection or have had this problem, please FAX her at (716) 433-6432 or write to her at 177 Willow Street, Lockport, NY 14094.

BOOKS: "Beyond The Myths" by Teresa Hill Story is available from C.O.S.S. for $23.00 ($20.00 plus $3.00 S & H.). It is straight talk about the breast implant settlement. I met the author in Washington, DC, and she is wonderful. She is a legal assistant and wrote the book after her experiences with breast implant patients. If you don't understand the settlement, this is the book for you. Send your request to C.O.S.S.

If you have wanted the book "The Untold Truth" and have not ordered it, now is the time. Unless they receive a large number of orders for books (50 or more), Patti and Marion will be unable to print more copies. An order form is enclosed with this newsletter, so please order the book now so they can make it available again. Part of the problem with the lack of funds is group leaders who ordered books and have not paid for them. We even know of one, in Michigan, that sold books and has not paid for them. Another, in Canada, owes for 80 books. We need to be ethical and honest with our dealings and not victimize the very persons who are helping us. Those who owe need to pay for books. It is not OK to use funds from the books to pay other expenses. Apparently Dr. Jenny has had the same problem with his "Silicone-Gate", having a current Nevada leader who hasn't paid him as well as a Canadian leader. If you are aware of persons who owe for books, please encourage them to pay for these. We cannot be in the business of cheating others. We are upset with the manufacturers' and doctors' lack of ethics, so let's be above reproach.

PRODUCTS AVAILABLE: ARE YOU ALLERGIC TO YOUR BRA: I experienced severe allergies to synthetics soon after receiving polyurethane/silicone breast implants 11 years ago, and it has gotten worse since explantation 1 year ago. Elastics, fabrics, and synthetic threads cause great irritation to my scars. Even sport bras are impossible with their elastic and tight feeling. I began wearing all-cotton tank tops which offer no support and look unprofessional as I tried to pull my life together. In frustration, I designed some cotton knit bras that do not bind, itch or sag. The plan is to manufacture and sell them internationally. There are three things you can do: 1) You can send a SASE for the first catalog of styles. 2) You can possibly become a co-owner of the company. 3) You can submit ideas you've discovered about various styles, fabrics, etc. This project is in its infancy, and I'm looking forward to hearing from YOU! Maybe we can come up with a sales program that provides income for networking sales. We've got to pull ourselves up by our "bra straps", find relief and comfort, and enjoy life! Realizing that hundreds of thousands of women are suffering like I am, I have a way to 'support' us--in comfort and style. Please write! Merry Rose, P.O. Box 2850, Pawleys Island, S.C. 29585 (803) 237-1225 FAX (803) 237-1167.

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.

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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.

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