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.

Related articles:

• Environmental Diseases are not unexplained mysteries
• School integration for those with MCS is possible
• Research on Multiple Chemical Sensitivity (MCS)
• Environmental Illnesses: Petition received the support from 26 countries more than 200 Health Experts and more than 240 NGOs

A Real Santa Claus Does Not Wear Perfume

Santa has an ear for the needs of all children, including children with allergies, asthma and chemical sensitivity (MCS). Santas are always open to hear everything a child desires, meaning their secrets, worries and concerns. For many children this seasonal private talk with Santa is an important event when they can privately disclose what is really on their mind.

So this year we wish that all children, including those who suffer from allergies, asthma and chemical sensitivity (MCS), will have the opportunity to whisper something special into Santa’s ear. We have designed an action card for printing. (The best way to print the cards out is on more solid paper or light cardboard).

And because Santa Claus is known for really loving ALL children, with some help, we can make sure every Santa Claus may share the Christmas warmth with every child. Hand the Santa a Christmas card, asking them to give up after-shave, cologne, fabric softener, strong smelling deodorant, and other fragrances this season. Whisper in the ear of the Santa Claus when presentating the card, that this small favor of being fragrance free will make all children’s hearts and eyes glow with gratitude.

ACTION CARD >>>

The real Santa Claus does not wear perfume, because he loves all children. Even those with asthma, allergies, or chemical sensitivity.

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Spanish Action Card >> El verdadero Papá Noel no usa Colonia

German Action Card >> Der echte Weihnachtsmann trägt kein Parfüm

Facts about Perfume, Scented Products:

• Scented consumer products shown to emit many unlisted chemicals
• The Reckless Self-Interest of the Fragrance Industry
• Secret Chemicals Revaledin Celebrity Perfumes, Teen Body Sprays
• New Discovery on the Causes of Contact Allergy
• Toxic Beauty – What you don’t know Can Hurt you…In Fact, It Already does

On November 2009 I was interviewed on Carne Cruda, Spanish radio program, to talk about Multiple Chemical Sensitivity and one of the listeners of the program, the videographer Víctor Moreno, was so impressed that he quickly contacted me to say that he wanted to make a short film about MCS to help us to raise awareness of this terrible disease and he asked my opinion and if I wanted to collaborate with them. Obviously I told him that they could count on me for what they wanted.

On March they began filming “The birds of the mine”, the first short film about Multiple Chemical Sensitivity in Spain, and now we can finally present the trailer and announce that its debut will be next December. When this project began, I had the honor of reading the script, because they wanted my opinion, and then I saw some scenes of the shoot and I can assure you that is very, very impressive, as you can deduce from the trailer.

Autor: Eva Caballé, No Fun, Oct. 25, 2010

Related Articles:

• A Book about Chemical Sensitivity will become a Radio Series in the near Future
• Interview with Eva Caballé about Multiple Chemical Sensitivity and about her book
• How to become a an MCS Activist in less than 365 days? Have a look to Spain!
• The naked truth about MCS – Multiple Chemical Sensitivity – Including Forewordabout German Situation

Do you remember, around the middle of 2010 when the parents of a young Spanish woman, Elvira Roda, who suffers from severe chemical sensitivity (MCS), asked for help? Do you recall that Elvira was living in a specially prepared, very expensive, pollution-free house where the city applied pesticides?

EMM Blog: Cry for Help – Young Woman in Danger

This seriously ill woman collapsed from the nerve agents, which were sprayed and resulted in putting her into a critical condition. For days she was in the worst health state possible and had to sit in a lawn chair by the sea. The parents tried to stop the city leaders from this application of pesticides, neurotoxic organophos- phates, but it was in vain.

A petition for Elvira, was released worldwide on many MCS blogs and by organizations. People from different countries signed, asking the city officials to refrain from spraying pesticides outside the home of this young woman.

Elvira’s life is in danger again

A day ago the parents of Elvira again asked for help because the city of Alboraya has now begun to spray a herbicide.

Please read her parent’s letter below and support by signing the petition for Elvira.

For Elvira’s sake:

Thanks to everyone who supported Elvira Roda by signing the petition to the Alboraya City Council in Valencia , Spain and asking them not to use chemicals that are harmful to humans and the environment, but instead requesting them to find healthier alternatives.

Our family has tried everything possible to prevent further spraying, but unfortunately today on October 5th, the Alboraya City Council will begin using new fumigation using Plus Roundup (glyphosate), and other environmentally harmful chemicals.

We have requested them to use environmentally friendly, natural alternatives, and asked the city council to inform the public prior to the spraying, but both requests were unsuccessful. We therefore believe it necessary for the health of all, to continue to collect signatures on the petition. We need you. With these efforts, we will certainly succeed.

Please help Elvira Roda! Tomorrow it could be one of you, who needs the help of us all.

For more information regarding Elvira’s situation, please see:

Support for Elvira Roda

To sign the petition, go to >>> Petition to Elvira Roda (sign at the bottom)

Thank you for your support!

For several years the Swedish Prof. Dr. Eva Millqvist researched the disease of hyperreactivity of the respiratory tract and the environmental condition of Chemical Sensitivity (MCS). She specializes in the range of responses to respiratory irritants.

Sick from odors and fragrances

Patients with respiratory symptoms which are triggered by chemicals and odors, are commonly found in allergy clinics. According to Millqvist and her team, these health problems are not explained by asthma or allergic reactions.

German patients frequently report that after they report reactions to chemicals or odors to their allergist, the prospect of seeing a psychologist has been recommended. Whether or not this recommendation is actually appropriate for these patients, it is precisely what this new study from Sweden addresses.

Studies showed reactions

Millqvist’s previous studies have shown that MCS patients often have an increased sensitivity to inhaled capsaicin. This ingredient of chili is famous sensory reactivity. A diagnosis of sensory hyperreactivity of the airways (SHR) is proposed for these kinds of complaints.

In a recent study this renowned scientist and two colleagues, sought to discover whether there is a relationship between asthma and sensory hyperreactivity (SHR). In addition, the research team wanted to investigate whether patients with signs of SHR had increased psychiatric morbidity (anxiety, depression, etc.).

Patients were subjected to tests and questionnaires

The researchers took 724 patients with suspected allergies or asthma from an asthma center. All patients had a questionnaire regarding reactions and behavioral disorders caused by fragrant substances.

A standardized Capsaicin test was carried out and then a questionnaire was given to assess psychiatric morbidity in patients with severe chemical sensitivity to identify those who suffer from SHR.

No evidence of depression or anxiety

Only about 6% of the asthma patients from the allergy center, who participated in the study, had sensory hyperreactivity (SHR). Millqvist and her colleagues stated that this is in consistent with the prevalence in the general Swedish population. There was no significant evidence that SHR is consistent with anxiety or is related to depression.

Patients should insist on precise diagnostic evaluation

The study appeared in the July 2010 issue of the medical journal “Annals of Allergy, Asthma & Immunology.” Those patients who respond to chemicals and odors with hyperreactive respiratory symptoms should perhaps seek an experienced environmental medicine professional if their allergist makes a reference to the possibility of a mental illness.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 2. September 2010.

Translation: Thank’s to Christi Howarth.

Literature:

Johansson A, Millqvist E, Bende M., Relationship of airway sensory hyperreactivity to asthma and psychiatric morbidity, Department of Respiratory Medicine, Central Hospital, Skövde, Sweden, Ann Allergy Asthma Immunol. 2010 Jul; 105(1):20-3.

When the book, “Missing. A Life Destroyed by Chemical Sensitivity” came into bookstores, the sales were surprisingly high. The author of this book, Eva Caballé is chemically sensitive and can exist only within the walls of her safe apartment. Several air filtering machines run day and night. She can tolerate only a few foods, and her water must be specially filtered. Visitors are not allowed into her apartment because the fragrance and detergent residues could cause her to experience a severe reaction. Despite the severity of her disease, this Spanish woman insists on enlightening the public about this condition. Her blog, NO FUN, became her mouthpiece and is read daily by thousands.

Through interviews which Eva’s husband David gave on TV, radio, and to newspapers, Eva’s story was known before her published book was on the shelves. Now her book will be made for a radio series.

Last month, David gave interviews for a radio program called “Vital Space” which discusses chronic illnesses. The program producers were enthusiastic about Eva’s book and want to make the public more aware of chemical sensitivity. Details regarding MCS are not yet well know in Spain.

The response was enormous, which led to the idea of the MCS book as a radio series.

Eva and her husband David agreed, and wrote an editorial for this series. Two professional actors, whose voices are very similar to Eva and David have been hired. A moderator has also been hired to coordinate the recordings. The whole book has been set to music and accompanied by background music. Next fall the series will begin. For each chapter there will be ten minutes of airtime available. Over a period of 21 weeks radio listeners will experience the naked truth about Multiple Chemical Sensitivity.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, July 26, 2010.

Translation: Many thanks to Christi Howarth!

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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
• Interview with Eva Caballé about Multiple Chemical Sensitivities and her book

Several years have passed. We still had local self-help groups and met monthly. We kept contact by phone, because barely none of our members had internet. Most of them became ill by chemicals at the workplace. Though it is ten years ago, we still remember certain people or episodes. Last week when a woman with Chemical Sensitivity (MCS) and severe toxic injuries sent an article for the blog, in which she reported on the struggle with the German Federal Insurance Institution for Employees because of a scheduled Rehab, we returned to a case.

Marked by chemicals

We had a meeting of our local “Workgroup of Chemically Injured”. The guy was rather young but looked quite older. He entered the room escorted by his sister. She had to support him, because the young man lost his sense of balance. After the speeches we chatted. The Sister said her brother was already exhausted as he tried to listen and he is nearly unable to speak. Once he worked at a big car tire manufactory. Now he is a health wreck. In spite of his harrowing state of health, the social pension fund created stress and refused to pay. The Workers Compensation didn’t act any more cooperatively: they denied realizing a connection between the desperate state of health and the chemical exposure at work. Though he was on the ropes, the young man was not willing to accept the experience of injustice by these insurance companies in addition to his physical suffering.

Brain damage by solvents

His sister told that he has gone through brain surgery. They hoped to manage his vertigo and his brain symptoms with a demanding operation. There was no improvement – rather the opposite. Most of the day he stayed in his room and watched videos. Contact with his friends was nearly broken for two reasons. The young man was no longer capable of conversation and he was unable to drive his car to his friends, who lived in neighboring locations. Friends who still came to visit him in the beginning were completely shocked by the bad health of their peer and could hardly deal with the sight. This few visits were the result, and then nobody came again.

Injured by chemicals at workspace

But for all of that the family of the man endeavored to enhance his state. The sister said that his condition isn’t always the same, so she hopes that there will be some turn for the better. She asked what the family may do to achieve a bit of health stabilization. At that time, my first advice to her was to arrange the man’s room to be absolutely free from chemicals and to abandon plastic materials completely, because he had become ill from synthetics, solvents and rubber.

The sister listened to my detailed explanations, how a clean room for a chemically sensitive person should look like. After that she rated the room totally inappropriate, in which the former quite vital young man spent nearly all of his time. There he had a TV, a video recorder, many video tapes, carpeting, a normal foam mattress in the bed and vinyl wallpaper. A room like the ones of many millions other young folks.

Aid by the family

The family was serious about it. They wanted to see the young man healthier again. They dedicated all their efforts. Two rooms at ground level were arranged for him. They tiled the floor and finished the walls with safe natural paint. They obtained a good air purifier, a mattress from natural material and made everything compatible.

Scarcely two months later the sister called me by phone. As she started to speak, the depression in her voice had completely disappeared. It is unlikely to believe, but her brother feels better worlds apart. At Saturday he even was able to visit his friends in the neighbor town riding his car without any help. She said, the whole family is overjoyed, because they didn’t consider such a recovery possible any more. The young man only became dizzy, when he was exposed to certain chemicals. He learned to detect such situations and avoided exposure. He left instantly when he realized them. Step by step his former vitality returned. The sister called more often and proudly reported on his further progresses.

Rehab in face of the delicate state of health

Then there was another call. Completely upset, the sister told that her brother received a letter from the social pension fund. He’s scheduled for a rehab. They rang up to tell the official from the German Federal Insurance Institution for Employees about the state of the young man and that he needs a chemical free environment and organic food. There was no understanding: he was liable to cooperate or otherwise his entitlement under pension scheme will be lost. The result of a call to the specified rehab clinic was that nothing there met the requirements for the young man’s health. Nevertheless he had to go into the regimen, they wanted to estimate his working ability and stabilize him, as they said.

Bring a wheelchair

At the next call, the voice of the sister was nearly dead. She told that her brother really had been in those rehab. She picked him up yesterday. He was there for nearly four weeks. When she phoned in, she was not permitted to speak with her brother. This was not beneficial for the therapy, they said. The day before yesterday they called her in the morning. She was told she could pick up her brother and may please bring a wheelchair.

Anger and pain

The sister reported that she broke out in tears as she came for her brother. No trace was left of the previous improvements in his health. His state was worse than before all the measures which had been taken by the family with great efforts and financial costs.

She had to carry her brother into the car helped by a male-nurse. She asked the nurse what had been done with her brother in the rehab. He shook his shoulders and turned his view to the floor. At this moment she had boiled with rage and went into the building then and closely looked at it. Heavy chemical smell from carpeting engulfed her. It’s just newly installed, so it still smells, the nurse told her. She asked to be shown to the room. Carpeting, smell of disinfectants, particle board furniture etc.

The refectory, in which her brother was urged to take his meals, was more than 100 meters away. To reach it he has to pass a long hallway without windows for ventilation, floored with carpeting which badly smelled from chemicals and adhesives. He repeatedly begged to be allowed to have his meals in the room, which was not allowed. Other patients even had offered to bring him the meals to save the staff from extra work. The directive was not changed; the young man had to resort to the refectory for the meals, where he additionally was exposed to perfumes, after shave and other scents. As he became unable to make it through the long hallway afoot, he got a walking frame, shortly later they gave him a wheelchair.

The indoor pool of the rehab was near the brother’s room. The odor of chlorine flooded the whole area. In spite of his heavy reactions to chlorine he had to take part in the exercise therapy in the swimming pool for several times. He was exempted from participation when he nearly “drowned” in the pool, because of a reaction.

In a strained voice the sister said after her report: “They have not made my brother healthy, they have executed him and now I know why I never was allowed to have a word with him. Any health success he had before the rehab therapy is destroyed.”

Health decline by rehab

This is no isolated case even if it is in his consequences one of the most worst cases ever reported to me. There are no rehab facilities adapted to the needs of chemically sensitive patients in Germany.

If patients with Chemical Sensitivity scheduled for a rehab ask about the local environmental conditions and explain that they cannot stay in such premises because of their reactions to chemicals, they were blamed for a lack of cooperation.

Some chemically sensitive persons had to accept a substantial decline of their health, because they were scheduled to rehab clinics which offered neither organic food nor chemical free environmental conditions, and where the smell of scent agents and disinfectants flooded the whole building.

Many chemically sensitive retirement pensioner aspirant tried to hold out – or managed somehow to hold out, to avoid being alleged for having not “cooperated”. These chemically sensitive patients feared to forfeit their pension claim. An enhancement wasn’t ever reported in a single case. On the contrary: what the chemically injured persons had regained by many restrictions and a environmental controlled living space was lost.

Finally? Hopefully

But it seems the German Federal Insurance Institution for Employees sees reason to show some understanding. A single mother struggled until the Insurance understood. Finally, the rehab measure for which they put her under heavy pressure was withdrawn, accepting her MCS and due to the lack of a suitable clinical facility for chemically sensitive patients.

Author: Silvia K. Mueller, CSN – Chemical Sensitivity Network, April 6, 2010

Translation: Thank you very much to BrunO!

Proof-reading: Thank you very much to John!

Related articles:

• The psychogenic Thesis for environmental diseases – No value for Science, destructive for legal Rights
• How to become a MCS-Activist in less than 365 days? Have look at Spain!
• Medicine needs shift in paradigm to focus on Environmental Medicine
• The last few months of the life of Angelika S. who was chemically sensitive

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

It took eight years until a doctor was able to make a correct diagnosis

The German newspaper Rheinische Post, one of the most noted papers in the Lower Rhine region, published an article about a man who hopped from doctor to doctor for eight years, until he finally got the right diagnosis. He responded to nearly all chemicals, even in lowest concentrations, which are almost omnipresent in everyday life. This was dismissed as mental problem for years. Then at last, the man from Rhineland received the proper diagnosis from a South-German physician: MCS – Chemical Sensitivity. If there was more focus on environmental medicine, cases like this current from the Rheinische Post, were avoidable.

Although he had physical troubles, he was told his problem was psychological

Ralf T. did a lot of sports until he developed more and more allergies. In addition to allergies, he experienced an increasing number of troubles, but no doctor could make a correct diagnosis and find the reason. The Rheinische Post lists the symptoms: “breathing problems, chronic fatigue, burn out, nausea, headache and many more”.

Cause of the disease: toxic adhesive

The graduate in sport science was a trainer in a fitness studio. An adhesive which was used to glue the flooring in his apartment ruined his health. It caused gas emissions of toxic chemicals which according to the Rheinische Post injured his immune system.

No help from the German obligatory health insurance

Now Ralf T. has to live in isolation and manage without money too. He would like to arrange his living environment to be toxic free to improve his health. But the attitude of the health insurance prevents such efforts. The Rheinische Post reports that the 52 year old wasn’t granted even basic things like a special bed. The insurance just hides behind regulations. There are no considerations what is indispensable to life for this man with environmental illness. He lacks any strength to resist.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, January 4, 9010

Translation: BrunO

Coretta Danzer’s guest appearance at the studio:

Finally we had to be in Huerth near Cologne on Wednesday 12-09-2009 at about 9 p.m. My husband and me, we went by our own car, because it is impossible for me to go by train. On arrival, we rang up the editorial office for someone to come for us. A pretty neat young lady led us to the backdoor of the building in order to limit my exposure to irritants to the lowest level. However and needless to say, somebody was smoking just in front of the rear entrance and this was my first trouble.

A TV-studio is not really the best place for MCS-sufferers

We reached the room that was prepared for me at the first floor through the staircase. The corridor and the room was carpeted with needle felt and my prompt reactions suggested that it probably was treated with pesticides. I came in and took my mask from my nose and with every fourth or fifth word my voice vanished, I could only caw raspy sounds and had a terrible sore throat. That’s my standard reaction to pesticides. Immediately we opened the windows and I took my oxygen, which made my voice come back after a while, but still left me the sore throat. A toilet was individually reserved for me and perhaps it was cleaned with plain hot water, but unfortunately it still smelled of “toilet chemistry”.

Nice reception

Then the kind female reporter who visited us at home also appeared and said welcome. Just for me she had washed her clothes and herself without fragrances. Again she explained the procedure to us a bit and introduced us to Mr. Runow, whom we didn’t know before. Next Mr. Jauch came to us and invited us to a dinner after the show, which I politely declined at the same moment, because I was sure, I was unable to manage that.

What MCS really is didn’t matter

Mr. Runow announced to the show master Mr. Jauch, what he intended to explain to the audience. He planed to present magic tree air fresheners and to demonstrate with an cranium cross section what’s going on in the brain if you have MCS. But Mr. Jauch didn’t like that and explained to Mr. Runow, that he is not allowed to do this. We all were somehow puzzled.

A “glass box” to guard me against chemical substances in the studio

Me and my husband, we were invited to the studio before the broadcasting, to test an ad hoc acrylic glass case. When I stepped into the studio, I though I will never get over this. I had not expected it to be so bad. Plastics and other things I could not define stank terribly. The acrylic glass box had a massive smell of synthetics, it made me cough heavily and I developed a strong headache, my head was really swimming and I felt so dizzy. I rendered my audition inside the box and after that we left as quickly as possible for the recreation room. I was glad to have my oxygen, because without it I could not have survived this.

In face of promises the MCS item was postponed

Now they told us that we were scheduled for 11:30 p.m. I already was so wiped out that I even was unable to protest, because I was promised to be the first or at least the second item, to keep me from long wait. So we sat about more than two hours in the room, with windows open and without heating, as I could not tolerate the smell of the hot radiators.

Hardly endurable physical stress

They called us to the studio on the commercial break before our turn. As I did before, I protected myself passing through the halls and stairways with my charcoal-mask and in the acrylic glass case I applied my oxygen to avoid coughing. The stink inside the box was as bad, but outside it was even worse. I allocated all my power and tried to concentrate as well as possible to answer all questions well. It was very, very straining. My head felt like it would burst, my eyes burnt like fire, as did my throat and my bronchial tubes. I felt dizzy and bad. I did not know what I was able to, not at all. I was glad when our contribution was over. But I had to wait in the box until the end of the following item, before we were allowed to leave the studio. Once again we went to the recreation room to pick up our togs and to to say goodbye and we drove home instantly.

It takes its toll to explain MCS

Two weeks after the broadcasting I am still symptomatic. Every once a while I still taste this disgusting flavor of plastics and I’m even more sensitive than I was before the show.

I received many emails and letters which I still have not answered completely, as I’m lacking the power to focus long enough on writing the answers. But I shall deal with answering them all.

To write this report took a lot out of me as well. But I will be pleased to answer more particular questions about the broadcasting.

Authors: Silvia K. Mueller and Coretta Danzer, CSN – Chemical Sensitivity Network, December 22, 2009

Translation: BrunO for CSN

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Subject (Betreff): About MCS Dec. 12, 2009