DON’T JUST MARCH FOR THE CURE,
LET’S MENTION PREVENTION!
Toni Temple, President of the Ohio Network for the Chemically Injured
Addressing the Parish Nurses
for Fairview, Lakewood and Lutheran Hospitals
August 8, 2001
My Former Background and History
Thank you so much for having me as your guest speaker today. Due to our limited time I would like to answer any questions you have at the end of my talk. You may also write them down and pass them to me. My name is Toni Temple. I am a former professional model, accountant, psychometrist, paralegal, Toastmaster and director of administration for three state trade associations, including the chemical industry. I am the mother of two, grandmother of three and president of the Ohio Network for the Chemically Injured (ONFCI), a not-for-profit organization educating and advocating on behalf of those with Multiple Chemical Sensitivity (MCS) and related disorders.
Nancy Langenderfer, my former Parish Nurse, asked me to bring photos of myself that were taken shortly before chemical and mold exposures disabled me. As you can see, the experience has taken its toll and has changed my entire life. In addition to MCS, I now have several other health disorders including chronic vascular conditions, blood disorders, iron deficiency anemia, pernicious anemia, peripheral neuropathy, diabetes, and chemical cellulitis, all as a result of exposures to chemicals.
Proper initial diagnosis is crucial and can prevent what happened to me. What you learn today may help you prevent personal illness and improve the health of your own family. We hope the Parish Nurses will be open to MCS education and will join with us in whatever ways possible to assist us in the prevention of disability through awareness.
What is MCS?
Are there any of you who do not know what MCS is? While there are more technical definitions of MCS including Cullen’s (1987) and the consensus Definition (Arch Env Hlth, 1999), the simplest explanation is that a major chemical exposure (or ongoing chronic exposures to commonly used but sensitizing chemicals) have caused overlapping health conditions which affect life functions (i.e., breathing, walking, working, etc.) and one’s ability to function in ordinary environments.
The formation of ONFCI and what it does:
I founded ONFCI out of necessity shortly after I returned to Cleveland in the early 90’s. It began as a much needed support group for those suffering from MCS and developed into an elaborate educational organization responsible for revolutionary events including:
The first book (Healthier Hospitals) to educate medical professionals about the needs of those with MCS in a hospital setting
Successful ongoing (since 1996) National Healthier Hospitals on the Horizon Campaign
Responsible for establishing guidelines for the development of the first written MCS hospital policies and nursing procedures to provide reasonable accommodations for the disability of MCS
The invention of the first public accommodation for MCS
Breaking barriers in MCS discrimination by providing educational materials and assistance to employers, employees, government agencies, churches, libraries, public facilities, courts and numerous others about the disability of MCS.
Initiating the sign on letter and petition to the US ACCESS Board to request them to address MCS accommodation guidelines
Being part of and providing information and guidance to the first MCS ad hoc committee at the US ACCESS Board which is currently researching indoor air pollution and safer building materials
Serving on the MCS ad hoc committee at the National Council on Independent Living (NCIL) and assisting in the development of MCS Policy for NCIL
Why I’m Here
There are thousands and thousands affected by MCS and related disorders, many living right here in the Cleveland area. However, I am not here today to solely discuss MCS. Chemicals cause many other health problems too. We are asking you to help us in our educational efforts to assist others in preventing environmentally caused health problems and disability through awareness.
Typical disease processes which may be caused by chemicals & nutrient deficiency:
Iron Deficiency and Hemolytic Anemia, Pernicious Anemia, Parkinson’s, Asthma, Alzheimer’s, Peripheral Nueropathy, Cancer, Brain Damage including Attention Deficit Hyperactivity Disorder (ADHD), Psychiatric Manifestations including Depression and Behavioral Disturbances, Arthritis, Vascular Disorders, Dermatitis, Autoimmune Disease and Multiple Chemical Sensitivity (MCS).
The Facts
There are no laws governing the safety or testing of many products including:
The cosmetic industry (includes perfumes, nail polishes and removers, artificial nails)
Cleaning products (includes disinfectants, deodorizers)
Personal grooming products (includes deodorants, shampoos, toothpaste, hair spray).
Uneducated people are getting sick from exposures to the toxic chemicals contained in these and other products.
What some hospitals are doing
Southwest General Health Center (SWGHC) and other hospitals have formed policies and procedures to provide reasonable accommodations for the disability of MCS
Southwest General Health Center provides continuing education classes to their medical staff on MCS and other illnesses caused by the environment
Some hospitals accommodate MCS based on individual needs
Some hospitals provide patient and family education and support for those with MCS
What the government is doing
US Department of Health and Human Services, US EPA, US Department of Labor, US Department of Agriculture and the National Environmental Education and Training Foundation (NEETF) have all joined forces in a 10 year initiative to educate health care providers about the recognition, management and prevention of pesticide poisonings and overexposures. See www.neetf.org/health/providers/index.shtm
The Institute of Medicine has addressed Congress about the need to update Social Security grids to include those who are having a problem with odors and the environment
The US Access Board has created a perfume free policy for all of its meetings
Vocational Rehabilitation has issued a memorandum on MCS
The Agency for Toxic Substances and Disease Registry provides free information on toxic chemicals and their health effects to the public (888) 422-8737 and www.atsdr.cdc.gov/
Identify triggers of environmentally caused illness
Help your patients identify diseases and adverse health effects caused by chemicals and the environment. Learn how to identify some general triggers:
• Pesticides
• Disinfectants
• Latex
• Food and medication additives, preservatives and coloring
• Perfume
• Petroleum based products
• Mattresses - we have a success story
• Fabric Softeners - we have a success story
• Medications
• Remodeling materials
• Treated CCA wood
• Room air deodorizers
Educate about predominant symptoms that may include one or more of the following
• Difficulties in breathing
• Temporary inability to ambulate
• Numbness of extemeties
• Depression
• Memory Loss
• General body weakness
• Flu Like Symptoms
• Irritability
• Nausea
• Anxiety
• Sinus inflammation
Typical problems in diagnosing environmentally caused illnesses:
All patients respond differently to environmental exposures (just as they respond differently to medications).
Exposures may cause immediate or delayed effects. For example, those with MCS, asthma, cerebral manifestations, inflammation and dermatological reactions will respond acutely. Some patients may present with cancer, Parkinson’s and autoimmune diseases years later from the very same exposure (i.e., pesticides).
Your patient may have been misdiagnosed. It is extremely important to note that the toxicological literature (See individual toxicological profiles available from the U.S. Department of Health and Human Services/Agency for Toxic Substances and Disease Registry (ATSDR) lists depression as a symptom of numerous chemical and environmental exposures (i.e., benzene, toluene, acetone and mold) and not necessarily a disease process. You will be amazed at the wealth of information about ill health effects that can be traced back to environmental causes of toxicity by products used in our daily lives.
What you can do to educate others
• Put related information on your bulletin board
• Write articles for the parish newsletter
• Visit MCS websites to learn of new warnings and other pertinent information
• Subscribe to MCS newsletters to keep yourself updated
• Educate your parish about making their church, school and daycare centers safer
• Ask them to choose safer, less toxic alternatives for building and remodeling
• Ask them to adopt integrated pest management practices
• Ask them to provide at least one perfume free church service per week
• Ask them to research the toxicity of carpeting, furniture, draperies and other materials and to choose safer alternatives
• Ask them to research cleaning solutions and select least toxic chemicals
• Ask them to refrain from using deodorizers
• Plan educational meetings centered around prevention of illness and disease
• Ask your church to form a community committee to make schools and churches safer for children
• Form a student group to brainstorm further ways of reducing environmental exposures
• Invite related organizations to exhibit at church health fairs
• Provide fellowship to those with MCS and related disorders
• Share the necessity for others to be sensitive to the needs of those who react to chemicals
• Set up an educational program on prevention of illness
• Educate the pastors, clergy, cleaning people, parents of students, and parishioners whenever you can about safer practices to prevent harm to health (i.e., do not let cars run in the parking lots, not to back up when their windows are open, etc.
• Have the parish brainstorm ideas and publish an environmental safety checklist for a fund raiser
• Have an organic breakfast fund raiser/and/or organic bake sale
• Have parishioners create a cookbook of recipes that do not include dyes, preservatives, sulfites and other additives harmful to health
• Provide educational resources and tools to others
• Utilize existing tools and develop your own (charts, brochures, lectures, newsletters, etc.) to educate about the prevention of chemically induced diseases
The possibilities are endless!
Finding Solutions:
Learn to be a detective -. Look for clues and ask questions about your patients’ environment, diet, personal grooming products and work/school or other environment.
Educate your patients to assist you in determining the causes of their illness and to develop a heightened awareness of their environment:
1.Show your patients how to keep a brief diary of daily activities, products used, and places frequented to detect patterns that may trigger adverse health symptoms
2. Tell your patients to record the date, time, location, what they are doing and any other unusual conditions when adverse health symptoms occur. (Exposures to lawn care pesticides, neighbors painting, diesel engines running, tarring of roads, eating or drinking a beverage, etc.)
3. Educate patients to learn about all of the side effects of foods and medications. Additives, preservatives, fillers, dyes and other ingredients may cause severe reactions.
4. Ask your patients to keep a diary of any over the counter pharmaceuticals, Rx drugs, herbal remedies, vitamins and any other supplements they are taking or have taken recently as a handy reference for emergencies or to easily locate potential causes of reactions and interactions
5. Teach your patients to keep a chronology of all of their blood and other medical testing results. It will assist them in looking for chronic conditions, alert them to improvement and/or progress of conditions and may assist their busy physicians in making quicker and more accurate diagnoses.
6. The chronology can also be utilized for comparison purposes and to prevent progression of illness. Health problems that are identified at an early stage may still be treatable (anemia, diabetes, certain cancers, B12 and other nutritional deficiencies, etc.)
7. Educate your patients to be an active participator of their health care team. No one knows about the patients as much as they do. Their input is crucial and may even save their lives.
Rule out Vitamin Deficiencies and Vitamin Toxicity
Supplementation with Folic Acid can mask pernicious anemia.
The elderly may not have intrinsic factor and therefore be unable to absorb Vitamin B12.
Vitamin B12 deficiencies cause both neurological and psychiatric symptoms including depression
Educate physicians about checking patients for B12 deficiency prior to placing them on anti-depressants
“Water pills” can pull more than potassium from our nutrient stores
Set a good example
Many patients are allergic to perfumed products and other personal care products including hairspray, fabric softeners and aerosol deodorants containing aluminum and perfume. Use the least toxic, non-perfumed personal grooming products during your professional hours. Books by Deborah Lynn Dadd at the library will give you recipes to create some of your own products as well as lead you to other resources
A few resources
ONFCI Literature - See your packet
Agency for Toxic Substances ATSDR www.atsdr.cdc.gov/ (888) 42-ATSDR
www.childenvironment.org Online educational posters and extensive information
www.breastcancerfund.org
www.neetf.org/health/providers/index.shtm (10 year initiative to educate physicians and medical professionals)
www.cehn.org Children’s Environmental Health Coalition
Cuyahoga County Public Library - www.cuyahogalibrary.org book lists and books, films and tapes available on MCS and related disorders
Beyond pesticides - www.beyondpesticides.com
Environmental Health Watch, Cleveland, OH (216) 961-4646
Ohio Network for the Chemically Injured - (440) 845-1888
Thank you for your interest in what we do. We have a monumental task and would like to have your help in educating others. Please let us know if we can assist you in any way or provide you with additional guidance and tools. We would also like feedback from you concerning our talk. I will now answer any questions you may have.
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