During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve.

My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. But although I got sick suddenly, the process itself happened slowly. I was preparing for MCS for many years before I was aware of it. My body was warning me repeatedly without my understanding what it wanted to tell me. But how could I know that everything happening to me was the prelude to MCS? It’s almost impossible to know since information about MCS is kept secret from the public and when anyone dares to raise a voice, they are automatically silenced by those who say MCS is all in the minds of the patients.

It’s not easy to understand what happens to you as you search for a diagnosis, all the while trying not to fail during the long journey while you are riddled with attempts to damage your self-esteem as you struggle with a more diminished health status every day. The last stage of this particular metamorphosis happens when you finally know what it is happening: you have MCS. And then you start to reconsider the life you have known before in order to adapt yourself and to survive into the future.

All of us have gone through the stage of crying over things that we have lost, to hate what we have become. Where is that tireless and impulsive person who took the world by storm? It’s a natural, healthy and necessary stage. But oddly, then comes the most difficult thing: to find our place in this new world in which we’re doomed to live.

And surprisingly, when I thought that my life couldn’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.

The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. My timid voice started to be heard on my blog, No Fun, and then gathered strength thanks to Delirio’s articles, which were translated into several languages. And the first of them, “The Naked Truth about MCS,” was read on the Spanish Radio 3 program Carne Cruda. It was then that I finally dared to do something I had never imagined I would ever do: to write a book.

The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. Missing: A Life Broken by Multiple Chemical Sensitivity is a fulfilled wish as I report the situation in which we live. It’s my metamorphosis inside the metamorphosis of living with MCS. It’s my testimony, my life, my reflections. It’s also my contribution to the fight we’re doing at an international level to have MCS fully recognized. My book is the clearest proof that MCS didn’t take away my essence or my attitude; MCS didn’t steal my dreams but rather it changed my dreams so that I could help others.

My wish is that a lot of books will be written by people who are “missing” because of MCS so that the public knows we exist. We are ill, but no one will silence us.

Author: Eva Caballé / No Fun Blog, published at Delirio 2010.

Translation: Oscar Varona (from Delirio’s team) and Eva Caballé with help from Susie Collins.

Japanese and German versions are following soon.

Related Articles:

• Interview with Eva Caballé about Multiple Chemical Sensitivities and about her Book
• Naked Truth about MCS
• Meeting betweenMinistry of Health and Multiple Chemical Sensitivity Associations in Spain

Yesterday (Feb 2, 2010), in an independent student newspaper from the University of New Hampshire, a professor of chemical engineering appealed to the community to take “Canaries” into account regarding the use of chemicals and especially scents. He spoke of those persons who suffer from Chemical Sensitivity and who have to be seen – like those former canaries in mines – as indicators for toxic chemicals.

Some American and Canadian Universities have a “Scent Free Policy” which means that the use of perfumes and products containing scents is prohibited within these Universities. All visitors have to meet this policy. It allows students with allergy and chemical sensitivity to work and study.

Professor Ihab Farag, Chemical Engineering Department:

Many of us are familiar with canaries, the beautiful, colorful birds that tend to sing most of the time. Canaries also saved many human lives in coalmines. This is because canaries are much more sensitive to toxic gases than humans. Miners would take canaries with them in the coalmine. If the canary stopped singing and fell (or died), the miners knew to leave the coal mine quickly to safety.

There are individuals who have developed a very strong sensitivity to many common chemicals. These people can be very negatively affected and irritated by fumes, chemical cleaners, disinfectants, cigarette/cigar smoke, engine exhaust, solvents, etc. These people are often called “Human Canaries” of the modern world, because of the chemical sensitivity similarity to that of Canaries. Human Canaries of the 21st century tend to be very strongly irritated by everyday chemicals like perfumes, hair products, shampoos, shower gels, after shave lotions, antiperspirants, deodorants, hand sanitizers, chap sticks, finger nail polish, etc. Human canaries look the same as other people, and when you see one you probably will not recognize he or she is a human canary until an offensive toxic chemical triggers his or her sensitivity.

Please be considerate to human canaries and help them to enjoy life to the fullest. One way you can help the human canary and at the same time lower your exposure to undesirable chemicals, is to go fragrance-free: avoiding perfumes, and fragranced personal care products.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, February 2, 2009

Reference:

Chemical consideration to the Human Canaries, Ihab Farag, Professor, Chemical Engineering Department, Letter to the editor 02-02-10, The New Hampshire, Independent Student Newspaper at the University of New Hampshire since 1911, Februar 2, 2010

A new study by researchers at UCLA and Brigham and Women’s Hospital in Boston suggests that improvements in air quality over the past decade have resulted in fewer cases of ear infections in children.

Ear infections are one of the most common illnesses among children, with annual direct and indirect costs of $3 billion to $5 billion in the United States.

“We believe these findings, which demonstrate a direct correlation between air quality and ear infections, have both medical and political significance,” said study co-author Dr. Nina Shapiro, director of pediatric otolaryngology at Mattel Children’s Hospital UCLA and an associate professor of surgery at the David Geffen School of Medicine at UCLA. “The results validate the benefits of the revised Clean Air Act of 1990, which gave the Environmental Protection Agency more authority to implement and enforce regulations reducing air-pollutant emissions. It also shows that the improvements may have direct benefit on health-quality measures.”

The research appears in the February issue of Otolaryngology–Head and Neck Surgery, the official peer-reviewed publication of the American Academy of Otolaryngology–Head and Neck Surgery Foundation.

The researchers reviewed National Health Interview Survey data for 120,060 children between the years of 1997 and 2006 and measured the number of instances of three disease conditions for each year — frequent ear infections (three or more within a year), respiratory allergy and seizure activity, which is not influenced by air quality but was included as a control condition.

These numbers were then cross-referenced with the EPA’s air-quality data on pollutants, including carbon monoxide, nitrous dioxide, sulfur dioxide and particulate matter, for the same time period. The study authors discovered that as air quality steadily improved, the number of cases of frequent ear infections significantly decreased.

The results also showed that there was not an association between improved air quality and improved rates of pediatric respiratory allergy, possibly due to the fact that allergens are not pollutants.

Reference: UCLA, Amy Albin,  Improved air quality linked to fewer pediatric ear infections, January 27, 2010

A new study led by Mount Sinai researchers in collaboration with scientists from Cornell University and the U.S. Centers for Disease Control and Prevention, has found higher prenatal exposure to phthalates—manmade chemicals that interfere with hormonal messaging—to be connected with disruptive and problem behaviors in children between the ages of 4 and 9 years. The study, which is the first to examine the effects of prenatal phthalate exposure on child neurobehavioral development, will be published January 28, on the Environmental Health Perspectives website.

“There is increasing evidence that phthalate exposure is harmful to children at all stages of development,” said Stephanie Engel, PhD, lead study author and Associate Professor of Preventive Medicine at Mount Sinai School of Medicine. “We found a striking pattern of associations between low molecular weight phthalates – which are commonly found in personal care products – and disruptive childhood behaviors, such as aggressiveness and other conduct issues, and problems with attention. These same behavioral problems are commonly found in children diagnosed with Attention-Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder, or Conduct Disorder.”

Phthalates are part of a group of chemicals known as endocrine disruptors, that interfere with the body’s endocrine, or hormone system. They are a family of compounds found in a wide range of consumer products such as nail polishes, to increase their durability and reduce chips, and in cosmetics, perfumes, lotions and shampoos, to carry fragrance. Other phthalates are used to increase the flexibility and durability of plastics such as PVC, or included as coatings on medications or nutritional supplements to make them timed-release.

“Recently, the government instituted regulations limiting certain phthalates in things like child care articles or toys that a young child might put in their mouth,” continued Dr. Engel. “But it’s their mother’s contact with phthalate-containing products that causes prenatal exposure. The phthalates that we found most strongly related to neurodevelopment were those commonly found in cosmetics, perfumes, lotions and shampoos. Current US regulations do not address these kinds of phthalates.”

For the study, phthalate metabolite levels were analyzed in prenatal urine samples of a multiethnic group of 404 women who were pregnant for the first time. The women were invited to participate in follow-up interviews when their children were between the ages of 4 and 9. The mothers were not informed of their phthalate metabolite levels and the researchers were unaware of their exposures when testing the children.

Follow-up visits were completed by 188 of the women and their children. At each follow-up visit, the mothers completed validated questionnaires designed to assess their behavior and executive functions. The researchers found that mothers with higher concentrations of low molecular weight phthalates consistently reported poorer behavioral profiles in their children. The strongest trends were in the categories of conduct and externalizing problems, characteristics typically associated with Oppositional Defiant Disorder, Conduct Disorder and ADHD.

“These are high level, chronic exposures that start before the child is even born, but continue throughout their life. More research is needed to examine the effects of cumulative exposure to phthalates on child development. But what this study suggests is that it’s not enough to regulate childhood exposure to these chemicals. The regulations need to include products that moms use,” said Dr. Engel.

Reference: The Mount Sinai Hospital / Mount Sinai School of Medicine, Mount Sinai finds prenatal exposure to certain chemicals affects childhood neurodevelopment, Jan. 28, 2010

New York State (NYS) employees who responded to the World Trade Center (WTC) disaster on or after 11 September 2001 potentially experienced exposures that might have caused persistent respiratory effects. NYS responders represent a more moderately exposed population than typical first responders. 

To assess whether NYS employees who were WTC responders were more likely than controls to report lower respiratory symptoms (LRS) or a diagnosis of asthma 5 years post-9/11, persistence and severity of symptoms were also evaluated. 

Participants were initially mailed self-administered questionnaires (initial, Year 1, Year 2) and then completed a telephone interview in Year 3. Data were analysed using Poisson’s regression models. 

WTC exposure was associated with LRS, including cough symptoms suggestive of chronic bronchitis, 5 years post-9/11. When exposure was characterized using an exposure assessment method, the magnitude of effect was greater in those with exposure scores above the mean. WTC exposure was associated with persistence of LRS over the 3 year study period. Results also suggest that participants with the highest exposures were more likely to experience increased severity of their asthma condition and/or LRS. 

The findings suggest that even in a moderately exposed responder population, lower respiratory effects were a persistent problem 5 years post-9/11, indicating that some WTC responders require ongoing monitoring.  

Literature: Mauer MP, Cummings KR, Hoen R., Long-term respiratory symptoms in World Trade Center responders, Bureau of Occupational Health, Center for Environmental Health, New York State Department of Health, Occup Med (Lond). 2009 Dec 24.