Alison Johnson, chair of the Chemical Sensitivity Foundation, speaks at the National Institute of Environmental Health Sciences
Posted on Jan 08, 2011 by Susie Collins in Blog, MCS, Susie Collins
Alison Johnson, who has dedicated her life’s work to bringing about full recognition of Multiple Chemical Sensitivity, gave a talk to officials at the National Institute of Environmental Health Sciences.
Johnson, above, skillfully wove statistics and personal accounts into a compelling appeal for deeper understanding of the human cost of MCS. (Photo courtesy of Steve McCaw)
The Environmental Factor, a Web publication of the National Institute of Environmental Health Sciences, reports on a seminar with guest lecturer Alison Johnson, chair of the Chemical Sensitivity Foundation, a nonprofit with a mission to raise public awareness about Multiple Chemical Sensitivity.
Brava to Alison Johnson for her tireless work to promote full recognition of Multiple Chemical Sensitivity!
By Alicia Moore and Gerard Roman
December 2010An Oct. 27 guest lecturer at the National Institute of Environmental Health Sciences trained the spotlight on growing concerns about Multiple Chemical Sensitivities (MCS), an environmentally triggered disability that has been linked to widespread exposures during wars in Vietnam and the Persian Gulf, as well as natural and man-made disasters, such as the BP oil spill and Hurricane Katrina.
MCS patient advocate Alison Johnson, chair of the Chemical Sensitivity Foundation, spoke about the condition during a seminar at the NIEHS Keystone building as part of National Disability Employment Awareness Month. The seminar was hosted by the NIEHS Disability Advocacy Committee (DAC) and co-sponsored by the NIEHS National Toxicology Program (NTP).
In his introduction of the speaker, Steve Kleeberger, Ph.D., NIEHS acting deputy director, said Johnson’s seminar was aligned with the NIEHS mission to “alleviate the burden of illness and disability,” as it relates to environmental exposures.
The attendance of NIEHS Acting Associate Director Chris Long, above, and Steve Kleeberger, Ph.D., NIEHS acting deputy director, underscored the extent of leadership interest in helping to accommodate people with MCS at the Institute and better understand how environmental factors trigger the symptoms of the condition. (Photo courtesy of Steve McCaw)
Johnson, whose own daughter has MCS, has devoted more than 16 years of her life to the topic. Johnson has authored three books, including Gulf War Syndrome: Legacy of a Perfect War and Amputated Lives: Coping with Chemical Sensitivity.
She has also produced and directed a number of documentaries (see text box below), including Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, Gulf War Syndrome: Aftermath of a Toxic Battlefield, and The Toxic Clouds of 9/11: A Looming Health Disaster.
The 1999 Consensus Definition of MCS characterizes it as a chronic condition with symptoms reproducible with repeated exposures. Even low levels of exposure result in manifestations of the syndrome, according to the definition, and symptoms improve or resolve when the incitants are removed. Symptoms involve multiple organ systems and can be severe or even debilitating.
According to Johnson, a national random phone survey revealed that 2.5 percent of respondents said they had been diagnosed with MCS. The results suggest that more than 7 million Americans may suffer from MCS, since many sufferers may not seek medical attention or receive a diagnosis.
Laura Hall of the National Toxicology Program, left, talked with Johnson afterward about her own experiences with sensitivities to certain chemicals. (Photo courtesy of Steve McCaw)
Johnson said recent cataclysmic events have led to an increase in the number of people with MCS. Approximately 34 percent of Gulf War veterans have MCS. Hurricane Katrina and the Gulf oil spill resulted in widespread exposures to chemicals, increasing immediate and long-term health risks for those exposed. Other exposure scenarios include the use of Agent Orange during the Vietnam War. Johnson said the incidence of MCS is growing rapidly and that it is no longer a rare condition.
There are many common MCS triggers in our environment, such as pesticides, building materials, new carpets, cleaning products, and cigarette smoke. Symptoms include headache, dizziness, muscle and joint pain, respiratory problems such as tight chest and asthma, gastric problems, extreme fatigue, and unusual memory loss.
In June 2009, Johnson explained, the Centers for Disease Control and Prevention (CDC) established an Indoor Environmental Quality Policy* for all CDC facilities. The policy prohibits scent or fragranced products at all times in all interior space owned, rented, or leased by the CDC, including use of incense, fragrance-emitting devices, wall-mounted devices, potpourri, plug-in spray air fresheners, urinal and toilet blocks, and other fragranced products. Johnson emphasized that an estimated one third of people are bothered by perfumes and that the suicide rate in the MCS community is increasing.
Johnson concluded her presentation by saying that to promote recognition of MCS is her main goal.
Following her talk, the DAC honored Johnson with an informal reception and a luncheon with DAC members. Johnson spent the afternoon at NIEHS meeting with various Institute leaders and employees.
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Putting a face on MCS
Johnson began her presentation with a 15-minute documentary about MCS and the people who are living with it written by Richard Starzman, and produced and edited by Johnson. The documentary demonstrates why, according to Bennie Dan Howard Sr. of the U.S. Department of Housing and Urban Development, his agency considers MCS a disability under the Fair Housing Act, Section 504 of the Rehabilitation Act — giving people with MCS protection against discrimination because of their disabilities.
A Gulf War veteran interviewed for the documentary said that once he had such a violent reaction to strong perfume that his blood pressure increased so much that emergency personnel thought he was having a heart attack — landing him in the hospital for four days. The veteran also had problems with gasoline, smoke, and cigarette odors.
An ironworker and World Trade Center first responder said the effects of exposure to chemicals in the field included burning in the nostrils, lung problems, and pneumonia. One woman interviewed had a case of MCS that left her disabled with dyslexia and learning problems with numbers and spelling.
Click on photo, video will open in new window.
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NIEHS biologist Alicia Moore is the former chair of the DAC. NIH Hispanic Employment Program Manager Gerard Roman currently serves as the NIH equal employment opportunity specialist for NIEHS.
The content of this post is not copyrighted, and it can be reprinted without permission. Link
*Link to information about the Centers for Disease Control and Prevention (CDC) Indoor Environmental Quality Policy, including a pdf of the policy.
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Melva Smith
09. Jan, 2011
Very well written. I can’t say enough about how much good Alision Johnson has done for the MCS cause over the years. Please keep these articles coming.
Susan Brinchman
09. Jan, 2011
Bravo re: the above presentation – very exciting . Many thanks for your years of service to those with MCS, Alison. Tomorrow, the US Dept of Justice, ADA section, will hold the final (in San Francisco) of three hearings, nationally, to engage with the public on changes they’d like to see related to the Americans with Disabilities Act. Public comments are being accepted and phone and in-person presentations given, with webcast etc. . Go to http://www.ada.gov center page to read about this. ADA needs to be more aware of the needs of those with MCS, there is definite confusion on the part of the counselors at ADA, the ones I spoke with recently thought MCS was NOT covered. Also, special equipment may have to be extended to include a chemical-free, protected environment, under 504, with that in place solidly, so many more could work and the general population in those buildings would be protected, as well. Go to http://www.ada.gov to view Notice of Public Hearings on the Advance Notices of Proposed
Rulemaking to Revise the ADA Implementing Regulations, tomorrow’s event that may be tuned into online and participated in, possibly, still, is January 10, 2011, from 9:30 a.m. to 4:00 p.m., PST, at the San Francisco Marriott Marquis, 55 Fourth Street, San Francisco, CA 94103.
Once again, thank you so much, Alison, and Susie (of the Canary Report).