Parents and pediatricians should routinely ask children with food allergy about bullying

NEW YORK – Nearly half of children diagnosed with food allergies who participated in a recent study are bullied, according to researchers at the Icahn School of Medicine at Mount Sinai. One third of those bullied specifically due to their food allergy. Almost eight percent of children in the U.S. are allergic to foods such as peanuts, tree-nuts, milk, eggs, and shellfish.

Nearly half of parents surveyed (47.9 percent) were not aware of the bullying—although both the bullied children and their parents reported experiencing higher stress levels and lower quality of life.

The study, titled, “Child and Parental Reports of Bullying in a Consecutive Sample of Children with Food Allergy,” appears in the online issue of Pediatrics on December 24. The study was led by Eyal Shemesh, MD, Associate Professor of Pediatrics and Psychiatry at the Icahn School of Medicine at Mount Sinai.  Dr. Shemesh and his team surveyed 251 pairs of parents and children. The patient and parent pairs were consecutively recruited during allergy clinic visits to independently answer questionnaires. Bullying due to food allergy or for any cause, quality of life, and distress in both the child and parent were evaluated using validated questionnaires.

“Parents and pediatricians should routinely ask children with food allergy about bullying,” said Dr. Shemesh. “Finding out about the child’s experience might allow targeted interventions, and would be expected to reduce additional stress and improve quality of life for these children trying to manage their food allergies.” Dr. Shemesh is Director of EMPOWER (Enhancing, Managing, and Promoting Well-being and Resiliency), a program within Mount Sinai’s Jaffe Food Allergy Institute. Dr. Shemesh is also Chief of the Division of Behavioral and Developmental Health in the Department of Pediatrics at The Mount Sinai Medical Center.

“When parents are aware of the bullying, the child’s quality of life is better,” said the senior author, Scott H. Sicherer, MD, Professor of Pediatrics, Chief, Division of Pediatric Allergy, Co-Director, EMPOWER program. “Our results should raise awareness for parents, school personnel, and physicians to proactively identify and address bullying in this population.”

Author: Mount Sinai, Researchers Survey Shows That Nearly Half of Children with Food Allergies Experience Bullying, December 24, 2012

The study, titled, “Child and Parental Reports of Bullying in a Consecutive Sample of Children with Food Allergy,” appears in the online issue of Pediatrics.

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Carrots, veggies and kids

Would you rather eat “carrots” or “crunchy yummy carrots”? Or, if you’re a youngster, “X-Ray Vision Carrots”? Kids seem to have an aversion to eating vegetables, but can this be changed? Previous work conducted by Wansink et al., in 2005 revealed that sensory perceptions of descriptive foods are better than plain dishes with no fancy descriptors. But can children be influenced to prefer vegetables using this same approach? To find out, researchers Brian Wansink, David Just, Collin Payne, and Matthew Klinger conducted a couple of studies to explore whether a simple change such as using attractive names would influence kid’s consumption of vegetables.

Name that food!

In the first study, plain old carrots were transformed into “X-ray Vision Carrots.” 147 students ranging from 8-11 years old from 5 ethnically and economically diverse schools participated in tasting the cool new foods. Lunchroom menus were the same except that carrots were added on three consecutive days. On the first and last days, carrots remained unnamed. On the second day, the carrots were served as either “X-ray Vision Carrots” or “Food of the Day.” Although the amount of carrots selected was not impacted by the 3 different naming conditions the amount eaten was very much so. By changing the carrots to “X-ray vision carrots”, a whopping 66% were eaten, far greater than the 32% eaten when labeled “Food of the Day” and 35% eaten when unnamed. The success of the changes is stupendous, and the fun, low cost nature of the change makes it all the more enticing.

In the second study, carrots became “X-Ray vision carrots,” broccoli did a hulk like morph into “Power Punch Broccoli” along with “Tiny Tasty Tree Tops” and “Silly Dilly Green Beans” replaced regular old green beans to give them more pizzazz. Researchers looked at food sales over two months in two neighboring NYC suburban schools. For the first month, both schools offered unnamed food items, while on the second month carrots, broccoli and green beans were given the more attractive names, only in one of the schools (the treatment school.) Of the 1,552 students involved 47.8% attended the treatment school. The results were outstanding: vegetable purchases went up by 99% in the treatment school, while in the other school vegetable sales declined by 16%!

These results demonstrate that using attractive names for healthy foods increases kid’s selection and consumption of these foods and that an attractive name intervention is robust, effective and scalable at little or no cost. Very importantly, these studies confirm that using attractive names to make foods sound more appealing works on individuals across all age levels!

Author:

Cornell University, Wansink, Brian, Just, David R., Payne, Collin R., & Klinger, Matthew. (2012). Attractive Names Sustain Increased Vegetable Intake in Schools, 17. September 2012

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For three decades Mary has dedicated herself to promoting the public health and improving the lives of people sick or disabled by environmental exposures. She has served on dozens of federal and state advisory committees including the recently concluded CDC National Conversation on Public Health and Chemical Exposures. She is a member of the National Institute of Environmental Health Sciences’ Public Interest Partners and HUD’s Disability Task Force.

Mary was nominated for the Freedom Medal by Diane Reibel, Assistant Professor of Physiology at Thomas Jefferson Medical School in Philadelphia. In nominating Mary, Dr. Reibel noted that “I met Mary twenty-five years ago when I became ill from chemicals in my research laboratory. Mary’s knowledge, support, and advocacy were a life saver for me. What Mary did for me, she has done for thousands of people across New Jersey and tens of thousands nationwide.”

Mary was recently honored with the 2011 New Jersey Governor’s Jefferson Award for Public Service, PSEG Environmental Stewardship Award, and a 2010 US EPA Region 2 Environmental Quality Award, the highest civilian award given by the EPA.

The Camden County Freedom Medal award was created in 2001 to honor the ideals indicative of the slain civil rights leader. According to Camden County Freeholder Director Louis Cappelli Jr., “This is Camden County’s way of honoring Dr. King.”

Medals will be presented during an evening ceremony at the Camden County Boathouse at Cooper River on January 20.

Author: National Center for Environmental Health Strategies, Press Release, January 2012

Congratulation Mary, this is so, so well deserved!

Scent marketing alarms the trade supervision and labor unions

Businesses that use fragrances in order to encourage customers to linger and buy, are becoming increasingly common. The scent marketing industry promotes the retail branch strongly. The fragrances that one finds in the shops are mixtures of different natural essential oils or chemical compositions. Neither is harmless for employees or customers. In Denmark, the trade supervision and labor unions are keeping their eye on the American fashion chain, “Abercrombie & Fitch”. The fashion chain is known for using the fragrance Citronellol, an aromatic oil that is classified as questionable because it can be harmful to one’s health and it can trigger allergies. The Danish trade supervision is currently committed to putting an end to the scenting in order to protect the employees and customers of the fashion chain.

Authorities and labor unions are going up against scented store environments

In Denmark, labor unions are paying close attention to the authorities’ course of action against the American fashion company “Abercrombie & Fitch”. In their shops, it smells strongly of perfume. The significant fragrance is supposed to bind the customer to the brand and increase sales. The newspaper “Politiken DK” reports that so-called scent marketing has extremely increased in Denmark in the past three years. Anyone who visits certain stores frequently or is employed there, can develop allergies. It is an unnecessary burden on the employees, because many of the fragrances can cause allergic reactions – the newspaper quoted the head of the trade supervision.

Contamination of indoor air with chemicals and allergenic fragrance oils

The perfumes for a scented environment are often led directly into the store through the air conditioning and ventilation system. Smaller shops set up bottles with aromatic oils, containing wooden sticks which release the fragrance into the room. Both are questionable, not only for people who already suffer from perfume allergies, but also for asthmatics and chemically sensitive people (MCS). Even healthy people may sensitize over time and develop allergies.

The trade supervision wants to protect employees and customers

We are most likely dealing with allergens, which are injected into the stores, is what the head of the trade supervision told the newspaper “Politiken DK”. That’s why the authorities tried to contact “Abercrombie & Fitch” at the end of last year. The authorities tried to make it clear to them that they wanted to protect employees against the high concentration of perfume in the shops, because it is an unnecessary burden.

Labor unions are receiving more and more complaints

Danish labor unions report that they receive more and more complaints from union members about the scenting of their workplace. Therefore, the actions of the trade supervision in the case of “Abercrombie & Fitch” are being closely observed. It is a major health problem for the employees in those stores, but also for the customers, said a union spokesperson to “Politiken DK”. The customers, unlike the employees have the choice and can simply stay away from the scented store. The employee unfortunately does not have this choice, especially in times when everyone is happy to even have a job.

It remains to be seen how the American company will behave, what measures the Danish trade supervision will take, and how much pressure the Danish labor unions will make. If the Abercrombie & Fitch” management is smart, they will stop exposing their employees and customers to substances that can cause illness. Sick employees cost a company money, and when customers realize why they don’t feel well in a shop and stay away, they too, can cost the company a lot of money.

The German Federal Environmental Agency has been warning against the use of fragrances for this purpose for years – through several press releases and it’s own published background paper which writes about this issue, „Fragrances: When something pleasant becomes a burden.” (german) An increase of scented shops has also been reported in Germany. So far, there is no authority or union which is really trying to prevent it.

Autor: Silvia K. Müller, CSN – Chemical Sensitivity Network, 17. Januar 2012

Literatur:

Politiken.DK, Duftende butikker er farlige for ansattes og kunders helbred, 13. Januar 2012

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Contaminant-free living area designed for the environmentally ill

Europe’s one-of-a-kind housing project is designed for Switzerland. The planned start for construction is spring 2012 and the project is estimated at costing 5.8 million Swiss francs. The small to medium sized ecologically built apartments meet the strict health requirements of chemically sensitive people. The Swiss housing cooperative “Healthy Living MCS” was founded three years ago and since then has been working toward the realization of an MCS housing project. The city of Zurich agreed and sees enormous potential in the MCS residential project. The knowledge won through this project can be very useful for future ecologically built residential projects in the city.

Construction begins in spring

The news came at exactly the right time. Christian Schifferle (video) sent an email from Switzerland just in time for Christmas stating the following:

“There’s good news: A few days ago, we finally received the building permit from the city of Zurich for our Zurich MCS-housing project. All our planning in the last two years is on track. In January, the City of Zurich will begin with the development work (access, water, electricity) and April /May is the official start of construction.”

Contaminant-free housing

In Switzerland, there were, as in Germany and Italy, already cases of suicide, because the appropriate living space for chemically sensitive people has not been available. When no one offers help, the despair and helplessness is tremendous if the apartments are uninhabitable due to a hypersensitivity to pollutants and nothing adequate is available. Christian Schifferle, the initiator of the housing project knows about the catastrophic housing situation through his consulting work and from his own personal experience. He spent years searching for a suitable, pollutant-free apartment and camped in a caravan in the country. Often he had to sleep in the forest, regardless of weather or temperature. A long time ordeal finally comes to an end for him and other environmentally ill. But Christian Schifferle is already thinking ahead and would like to develop pollution-free housing projects for the environmentally ill all across Europe in cooperation with the MCS housing cooperative.

Author: Silvia K.Müller, CSN – Chemical Sensitivity Network, 02.01.2011

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We have nothing left to fear anymore

Fear is a very useful coercive intimidating tool to silence and control people. A silent threat subtly reminds you that you can lose what you have. Do not complain, do not make any noise, because this might make your life even worse and turn it into a nightmare. They frighten the masses so that they don’t dare to revolt. They censor and distort reality.

But fear is a double-edged sword when used on people who have little to lose. When your day consists on struggling to survive, when you live in a parallel reality that no one around you can even imagine, you lose the fear of this abstract fear that they want to instill in you.

The harsh and heartbreaking reality prevails. The conditional and future tenses disappear against a present that overwhelms and leaves no room for anything else. The here and now is all that matters and the fear of the fear is simply ridiculous against the real problems that force you to push on tirelessly, to carry on and just survive. When every day is a real battle that tests your physical and mental strength, the fear of fear is nothing more than a fallacy, a ridiculous threat compared to the undeniable obstacles of the underworld in which you have been doomed to live.

Sometimes you dare to lean out the window, in a risky game to see how the supposedly fortunate people live, and you are impressed to see that they are paralyzed by an unreal fear that keeps them lethargic and living without feeling. It’s almost tragic to see how they tiptoe through their lives, afraid, anesthetized and controlled, and without even being aware of it.

Those of us who live extreme situations every day, such as those of us affected by Multiple Chemical Sensitivity; those of us who have been relegated overnight to being second class citizens without rights but still with all the responsibilities; those of us who have become nomads because a poisoned and dying world steals our health, our life, our dreams… we are not afraid of fear, because there is no room for cowardice when you face a reality that exceeds any fear that they want to instill in us to intimidate us, to dominate us and simply to destroy us. What we feared has come true. We have nothing left to fear anymore.

Author: Eva Caballé, No Fun Blog, Delirio, 12. September 2011

Photo: David Palma

More articles written by Eva Caballé:

• Naked Truth about MCS
  
• Metamorphosis insinde Multiple Chemical Sensitivity
• Dreams that kill
• MANIFESTO – We know they are lying to us
• Without Mask
• Environmental Diseases: To understand or to ignore

Evidence for the causes of environmental diseases have been around for a long time

The doctor and scientist Doris Rapp is one of those who not only practice environmental medicine, but has also made environmental medicine the most important thing in her life. The American spent two weeks in Germany. The reunion with Prof. Rapp was very productive and we were lucky enough to spend a beautiful day on the Moselle. Here is a small summary.

Researcher documented environmental disease

I met Prof. Rapp for the first time at a congress in Bad Emstal about 18 years ago. It was a crucial experience. In her presentation, she showed a video about a teacher who became ill from contaminated carpeting in the school. The teacher was filmed during a reaction to contaminated dust from the carpet. This video vividly conveys to the viewer what MCS is and what a reaction can look like. At that time I was at the very beginning of my own illness and had had similar reactions to certain pesticides. The teacher experienced convulsions and fell unconscious. I thought “my goodness, that’s me, that’s exactly like me, that’s what you have…“ After the lecture I spoke with Prof. Rapp and that was the beginning of an ongoing exchange of information and an interesting friendship. We met again at conferences in Germany, Holland and in the U.S., visited each other in Germany and the United States and exchanged e-mails. When I visited her in Scottsdale, she showed me one of her video archives. She had stored thousands of videos of children whom she had treated. They showed the patients during and after therapy and during testing of foods, mold, pollen, dust mites or chemicals. They displayed impressive evidence that can remove any last doubts as to the existence of environmental illnesses and allergies.

We can no longer ignore environmental illnesses

Dr. Binz and his wife invited the environmental doctor for this most recent visit to Germany. We had actually arranged to meet for a trip along the Moselle, which would start before lunch. We had a warm reunion and before we knew it we had already exchanged information and ideas and were in the midst of planning for future projects.

“I’m over 80 years old now and have no children, I don’t really need to be doing all this and I could be enjoying my peace at this age, but I see what’s going on, and I simply cannot remain silent. We have so many chemicals in our environment, in the food we eat, in the water we drink and the air that we are constantly breathing. They affect each of our body systems and we can no longer ignore this. Almost every second person in my country has cancer and that is just not acceptable”, says Doris Rapp.

“The politicians and the public must realize the impact the flood of chemicals has on us and no one should keep insisting that we do not know where all the increasing diseases that occur are coming from. The evidence is there. We have animal testing to prove it. That’s why, as a doctor, I ask: How much more has to happen before we admit to the real causes? I won’t accept hearing when one says, “Yes, but there’s nothing we can do about it.” Yes, there is, because you can educate yourself and there’s a hell of a lot you can do,” says Prof Rapp, who is enraged about the current situation.

Solutions are often very simple

Prof. Rapp is no one who can be at odds with the world and ignore the solutions. She is in the process of writing another book. “It will be a small book, only 30 pages. Every reader can easily understand how he/she can shape his environment in order to stay healthy. The tips in this book will not cost anyone a fortune, they can easily be implemented without major expense. It will help anyone who wants to change something and wants to improve his health. The doctor cites two examples:

“Many people react to foods, but are not sure towards which foods. Expensive tests are not necessary. I advise people to think about what they eat most, foods that they downright crave. Experience has shown that these are the foods that are eaten every day and most likely those which cause reactions. The solution: omit the suspected food for a week. You can test one food after another. This costs nothing! ”

“Some people live in a house that is contaminated with pollutants or contaminated by mold. My experience is that five out of seven people can improve their health by 70% if they obtain a high quality air cleaner that is capable of filtering hundreds of chemicals from the air in your home. Such a device may cost a bit, but I have often seen patients who got better over night. So it’s worth it if you are unable to directly move out of the apartment or house.”

The new book will be published this year, and Professor Rapp has authorized me to translate it into German. She also gave me permission to translate videos and other books into our language, contributing knowledge to allergy sufferers and chemically sensitive people in the German-speaking countries, helping them to find a way back into life.

A trip along the Moselle

During the drive to the historic Moselle wine village, Bernkastel, to Traben-Trabach and the drive back to Trier, Prof. Rapp was bursting with innovative ideas that we will begin to put into action in the next few months and they will benefit the environmentally ill in many ways.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 12 September 2011

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Life-threatening asthma attack in airplane triggered by Permethrin

An Irish businessman suffered from a severe allergic reaction during an Air France flight because the airline sprayed the pesticide permethrin on board. James Lapham sued Air France and received €50,000 compensation for damages for the first time in history as was stated in the Irish Independent newspaper. Mr. Lapham, an asthmatic, barely survived the incident and is still receiving medical treatment after 8 months.

Pesticides are often part of everyday life on board

The spraying of pesticides on planes is not unusual. For hygiene reasons, and because it is feared that pests could be transported, many countries require the spraying of pesticides. Normally, the passengers are not informed or warned. The estimated number of passengers who suffered health problems during a flight due to pesticide on board is most likely high. Airlines worldwide now fear that this case could constitute a precedent, and that other passengers suffering from ailments may call upon this case.

A German lawyer led a lawsuit against Air France in 2008. He had also suffered health problems caused by the spraying of pesticides on board. The airline denied him the information as to what pesticide had been used. The Frankfurt regional court’s verdict in December 2008 gave the attorney only half right.

An even bigger worry for the airlines than the single passenger cases, is complaints from flight staff who have become ill due to pesticides and may take advantage of the current case.

Asthma attacks caused by pesticides

The Independent writes that James Lapham was on a flight from Rabat to Dublin when the incident occurred. He had only been on board for 10 minutes when he experienced breathing difficulties. The Irish Independent reports that the flight attendants had sprayed permethrin, a neurotoxic pesticide, in the cabin. Permethrin is a Pyrethroide, and is a pesticide which is known for, among other things, triggering allergic and non-allergic asthma. Permethrin is prohibited on flights in the U.S. because the pesticide has been classified by the EPA as carcinogenic since 1997.

Emergency landing due to asthmatic’s reaction to pesticide

The Irish businessman reacted so violently to the permethrin that the flight attendants had to give him oxygen. This intervention was not enough and Mr. Lapham’s asthmatic condition worsened and the aircraft was forced to make an emergency landing in Morocco. The businessman was brought by ambulance to a hospital, where he was stabilized with cortisone. The Independent stated that Mr. Lapham might indeed work again, but is still in need of medical treatment.

Sick due to pesticides in airplane – not an isolated case

The Irish businessman James Lapham is not an isolated case. Particularly flight staffs on long-haul flights in hot regions have been complaining for years about the use of pesticides and the damaging health effects caused by the toxic chemicals. Court cases in different countries are pending and flight attendants have organized internationally for years.

James Lapham pled at the Irish High Court at the Montreal Convention. Passengers cannot receive more than € 100,000 damages under this convention, the Irishman won half, €50.000. Whether more cases will be recognized can not be predicted, because airlines still claim that permethrin had been recommended by the WHO, although scientific studies on the health damaging effects of neurotoxic pesticide are increasing.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 21. August 2011

Literature: Independent, Airline pays out €50,000 in pest-killer spray case, August 09, 2011

Support for sufferers of Aerotoxic Syndrome: AEROTOXIC ASSOCIATION

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Environmental contamination from the everyday habits of humans cause “perfumed” fish

We encounter fragrances in everyday situations. We have “our world” scented even if we prefer to live fragrance and chemical-free. These scents come to us via our daily hygiene, food, cleaning products, baby diapers, candles, hotel rooms, and even socks and subway tickets have fragrance added. Mixtures of chemicals usually make up the perfumed ingredients. They accumulate in our fatty tissue, breast milk, and in our environment. A governmental laboratory in Switzerland found fish in high alpine lakes with fragrance ingredients. How did they get there, at altitudes seldom reached by a hiker, in a region where nobody lives?

The dream of clean air and water

Take a look at a peaceful scene in nature… high mountains at two thousand meters, crystal clear air, breathtaking panoramic views with deep blue mountain lakes. This scenery gives one the opportunity to feel one with nature, but appearances can be deceiving. A Swiss government laboratory for analytical chemistry has found samples of fish from the lakes in high mountains and lowlands which contain persistent organic pollutants (POPs) and fragrance ingredients.

Fish repository for insecticides, flame retardants, and fragrances?

Fish were examined from alpine lakes in seven regions above 2062-2637 meters sea level. The scientists found concentrations of old insecticides, and long banned chemicals like DDT, DDE, dieldrin, HPEX, HCB, HCH, PCBs, PCDD / F and PBDE in the fatty tissue of the fish . In addition to these highly questionable chemicals were found seven different artificial musks and Musk xylenes. These chemicals are components in fragrance mixtures, which are found in nursing, cleaning, laundry products and perfume.

Precipitation transports chemicals to the lake fish

Concentrations of PCBs, PCDD / F and PBDE were found in fish from high mountain lakes as well as in the lowlands. Things were very different from the concentration of synthetic musk compounds. These substances which came out of detergents and cosmetics were found in higher quantities in fish of the lowlands than in fish in higher regions. The reason is that the lakes in lowland regions are much more contaminated because sewage treatment plants release water which is still contaminated with these substances. An effect which doesn’t exist in higher mountain regions.

Everyday scents have side effects

According to the Swiss scientists, there is only one explanation for the fragrance ingredients and persistent chemicals in fish found in the high mountains: they come directly from atmospheric precipitation and air pollution. Rain, snow, and fog from our atmosphere in these regions are the cause/source for the contamination of the fish with fragrance ingredients. The environmental contamination from the everyday habits of humans cause “perfumed” fish. This development should show everyone the importance of having a critical mind in a scented world.

This year, which is more recent that this 2007 research, there was also an article in Berner Oberland about the fish in Lake Thun not being good for eating due to the chemical contamination.

Author:

Silvia K. Müller, Seit wann benutzen Fische Parfüm, CSN – Chemical Sensitivity Network

Translation: Christi Howarth

Literature:

Schmid P, Kohler M, Gujer E, Zennegg M, Lanfranchi M. Empa, Persistent organic pollutants, brominated flame retardants and synthetic musks in fish from remote alpine lakes in Switzerland , Swiss Federal Laboratories for Materials Testing and Research Laboratory for Analytical Chemistry Dubendorf, Switzerland. Chemosphere, January 2007

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Let me live!

Patrick is 19. His American football gear is in his closet, and in the corner of his room his electric guitar lays on the shelf next to the brilliant lyrics he wrote. His songs have a meaning, not just modified, banal versions of some well-worn songs that were eventually on the top of the charts. No way. Patrick’s music gets down to business and strongly suggests that the songwriter is not a wimp, but instead confident and that he has something significant to say. When Patrick wrote the songs/music, he went to high school, which earlier posed no problem for him, and he enjoyed a life outside of school as well. His buddies were always with him. Life then was to be lived! But now the American football equipment, the guitar, the unfinished recordings, and song books remain on the dusty shelves.

Those were the times

When Patrick lies on his bed in his room it seems like decades since he was with his band buddies on the stage. Sometimes he has flashbacks where he again sees the faces of the girls in front row of the stage, glowing, looking reverently up and so moved by the band’s damn good music. When these flashbacks return, Patrick is reminiscent of the life he used to live. Patrick would like to scream really loud so everyone can hear:

“My body and my pain hold me prisoner. I cannot leave and live like others. A broken body makes me a cripple. It forces me to not always do things that I would like to do. But I want to live.”

Causes and effects

Patrick is sick from chemicals and his body has developed an extreme form of chemical sensitivity (MCS). Some chemicals have the capacity to sensitize the body. In medicine, this is well known that some chemicals like formaldehyde, isocyanates, and some pesticides are able to cause illness. Everything has played a role in Patrick’s current condition. His father was a chemist and had 30 years of contact with chemicals which are capable of damaging genes. No one can define precisely the effects of the countless years of exposures from the not so harmless chemical cocktails where Patrick’s father worked. The fact is, that Patrick’s father, because of work-related health issues, no longer has his health and is seriously ill. Perhaps the house where the family lived also played a role in the illness. Seven times they had high water which left mold on the walls. The walls were washed extensively with chlorine, a highly toxic chemical. Also the wood preservatives in the house could have played a part in Patrick’s state of health.

Others have lived at least

The average age of people who are chemically sensitive, is from 35-45 years, according to studies. There are also sufferers who are much older and some who are still toddlers, but the majority of sufferers had a life before MCS. For Patrick, it’s different:

“Excuse me, I don’t want to offend the others, but the other MCS sufferers were allowed to enjoy prior life experiences (youth, school, training, travel, friends, partnership, etc.), but I was denied everything from the beginning. The best time of life, my youth, has not been granted to me. On the contrary, I am going through hell, but no one is interested, because they do not believe me.”

Ciao buddy

After Patrick broke down completely, the compassion of his buddies and classmates was just great. They came to visit him and provided him with information from school. That gave him the opportunity to continue his school for awhile. When that was no longer possible, he tried getting his education on the internet, via a correspondence school. But now that is over. No more calls, no more visits. Patrick experiences unbearable pain as he feels like he too is covered in dust like his guitar. The girlfriend he had whom he wanted to build a life with, now also lives a life without him, perhaps with someone else. Patrick experiences pain on another level besides just the excruciating physical pain of the illness. He is furious and says:

“I cannot believe that since I’m not out there, I must not be forgotten and do not exist. My struggle must not be in vain.”

“It is hard to accept that everything I have achieved to this point is destroyed.”

“I have resigned myself that I will probably always remain living alone. There is no compassion for this disease. In fact, on the contrary, I am immediately excluded. What girl or young woman is prepared to make such a sacrifice, and how will I even find a person when I need to live a life of isolation? Forget it. This also applies to other friendships as well. ”

“Although various people helped me earlier, now only two friends remain – I’ve always given everything and now … I’m just dropped, since I cannot keep up and have become too annoying or too complicated to all the others.”

To go out at least once

Besides all the bad luck Patrick and his parents experienced in the past, they also lost their most faithful companion too. So Patrick’s mother bought a new dog so that her son has some life in the house and finds some comfort through the love of an animal. The decision was good for the dog and he is very fond of Patrick:

“As much as I would love to be in nature for a couple of hours with our dog for training or just playing only with him, I am not even granted this.”

Simply cut the strings and let the frustration out

If Patrick was frustrated, it was hard to miss. He grabbed his guitar and the sparks were flying as he sang until the walls shook. That has not happened often, but when it did, everyone in the house knew after two minutes. Music is life and a way to express yourself, to let out what the mind has suppressed. But even allowing the frustration and the anger to be let out, is no longer possible for Patrick:

“Playing guitar and singing means so much to me, but my damn body does not even allow that. The muscle weakness and pain again slow me down, and of course, my dream of American football is over.”

MCS means in the worst stage of a “life” in total isolation

Patrick is one of the MCS patients who having a life outside the four walls is impossible. It should not be confused that these people do not want to be, among others, but on the contrary, the wish and desire to do something with other people remains every day around the clock. It is not a psychological problem or fear of people. The body simply gives up when exposed to chemicals. Car exhaust, heater exhaust gases, perfumed people, houses, from which wafts the cleaning products. All chemical cocktails present a difficulty for chemically sensitive people to have a chance to move about.

A short contact with the outside world means having extreme pain, seizures, difficulty breathing, collapse, or unconsciousness. The same applies for visiting. If someone comes to visit, the joy for Patrick can quickly lead to disaster. The deodorants or residues from the dry cleaners in the jacket, fabric softeners, which cannot be totally washed out will make the visit impossible. Utter nonsense? Not at all. Who will make the effort to find appropriate ingredients for “everyday products” that will bring about severe consequences for a man whose body is hypersensitive? What companies will makes the effort to accommodate hypersensitive individuals as they produce products? Not even most doctors will attempt to understand this chemical hypersensitivity. This is due partly out of ignorance, because they have never heard of the disease, and simply because they lack time to investigate further. And if doctors are not smart and declare the disease as a quirk of convenience, how can ordinary people understand those with MCS?

Patrick’s opinion on MCS:

“MCS is the worst disease out there; sometimes I wish I was a paraplegic. I know this sounds harsh, but I would not be so isolated, left alone, not credible, and would have no pain. I could travel in spite of this handicap, going almost everywhere, going to concerts, meeting friends, and possibly make training, and, and. “

The whole family is ruined

Patrick’s parents are willing to do anything for their son, so he can have his life back. But MCS is too complex to just fight the disease with medicine and a few natural remedies. One must start by establishing a clean living environment. Patrick and his father would need a living space that is chemical-and mold-free as much as possible. But how do you implement that? The house in which they have is hard to change due to the financial loss due to his father’s illness.

Help from authorities? No

Patrick should actually have a good case for the authorities to help, but because he has no education, there is no funding, no basic security, which is humiliating for the young man. His mother says:

“We get help from nowhere, in fact, it is quite the opposite. We are harassed by authorities and they make demands on Patrick which he cannot satisfy. Anyone who can count to three must see that. But nobody takes the trouble to look at the misery, instead, decisions are made that are devoid of any humanity. Yes, Patrick virtually exists only on the card. This illness ruined my two men and those who might know how to help and change things for us, look away too easily! ”

“Many people ask me, how has this total isolation been for over the last two years? They say to me, “I would go mad …. I would go crazy … I imagine the bad, and, and …” They also ask, “Where does Patrick, or where do you get the strength to keep going?”

The response from Patrick’s mother: “You can see that Patrick lives and we also manage. Somehow we are probably fighting spirits and do what we try to be bold, brave, and strong willed to survive. The struggle for justice makes us stronger. “That’s what Patrick’s mother says to the outside world, but inside she often thinks, how long does will the body last, like the heart muscle. Every day she must be available around the clock for her men. Every day is actually a struggle for survival, for Patrick, as well as his father.

Optional: a human decision

That which was given to Patrick and his parents since March 2009, is staggering. His parents submitted an application to determine his level of disability. Now a court ruling says that the 19-year-old man who is suffering from unbearable pain all day, and reactions to chemicals must go into a hospital. The hospital has assured the court that it is equipped for emergencies so there shouldn’t be any problems.

• What if he’s there and collapses completely? Who bears the responsibility for him then?
• Who pays to stay in a hospital environment abroad, because in Germany there is no help?
• Can a normal emergency procedure help him to bounce back?
• What if not?

There are no environmentally controlled hospitals for MCS patients in Germany. No hospitals can assure a complete freedom from chemical exposures at all. The hospital rooms discussed in a previous CSN article which are in Hamburg for the environmentally ill, are still not in full operation and they are also only for medical intervention, not for environmental treatment. Thus Patrick’s health would possibly be further compromised by this current court ruling the way it now stands.

So far, instead of support costs caused

Administrative expenses have already cost a fortune for Patrick, a 19 year old, with unbroken will to live. Legally, there is the possibility of seriously ill people remaining in their homes, and being examined within the safety of their own four walls. For Patrick, allowing this would be an act of humanity. This young man wants nothing more than for his disability to be determined. His disability and disease are detected nowhere better than in his own home where everyone can see with their own eyes what the illness actually means for Patrick and his family.

Authors: Silvia Müller and K. Kira, CSN – Chemical Sensitivity Network, 9 July 2011

Translation: Christi Howarth

Note: Patrick’s documents are complete before CSN.

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• Environmental Diseases are not unexplained mysteries
• School integration for those with MCS is possible
• Research on Multiple Chemical Sensitivity (MCS)
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