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Seminar explores multiple chemical sensitivities topic

By Alicia Moore and Gerard Roman
December 2010

Hall stands in front of a table as she gives her presentation
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)

NIEHS Acting Associate Director Chris Long listens to the presentation
The attendance of NIEHS Acting Associate Director Chris Long, above, and Kleeberger 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)

Hall and Johnson having a conversation
Laura Hall of NTP, left, talked with Johnson afterwards about her own experiences with sensitivities to certain chemicals. (Photo courtesy of Steve McCaw)

An Oct. 27 guest lecturer at NIEHS 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 ( Exit NIEHS, 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.

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), 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.

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.

(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.)

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.

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