Archive for category ‘Chemical Sensitivity, MCS‘

METAMORPHOSIS INSIDE MULTIPLE CHEMICAL SENSITIVITY

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:

Meeting between Ministry of Health and Multiple Chemical Sensitivity associations in Spain

On February 4th 2010 at 12:00h has been held the meeting with Ministry of Health to state the situation of Multiple Chemical Sensitivity sufferers in Spain.

Mr José Martínez Olmos, Secretary General of the Ministry of Health, Mr Alberto Infante Campos, General Director of Professional Planning, Cohesion of SNS and High Inspection and Mr Francisco Valero Bonilla have attended to the meeting representing the Ministry of Health. One person by almost each MCS association has attended to the meeting and also Jaume Cortés, lawyer of Colectivo Ronda, and Dr. Pablo Arnold, immunologist specialized in MCS.

A petitions document done by MCS associations under David Palma coordination has been submitted. This document has been signed by:

Also a copy of Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivities) has been hand delivered on behalf of Eva Caballé, who couldn’t attend to the meeting, as an example of what MCS sufferers have to go through in Spain.

The meeting with Ministry of Health has meant an agreement on minimum standards by the Ministry, but a big hope for all MCS sufferers.

Representatives of Ministry of Health have committed to contact MCS associations within 2 weeks to jointly agree on experts to form a Scientific Committee to create a document of consensus on the MCS. They have stated that this is the first step to make possible the inclusion of the MCS in ICD-10, i.e. its official recognition as disease in Spain. They have demonstrated that later there would be necessary to start creating the guidelines.

All people who have been part of this process are thrilled by the result of the meeting, because doors have opened us to obtain the recognition of the Multiple Chemical Sensibility in Spain and to achieve that MCS sufferers have the same rights as the other chronically ill people.

Authors: Eva Caballé, David Palma, NoFun, February 4, 2010

Professor urges us to take people with chemical sensibility into account

 

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

Open Letter: Perfumed Stamps Constrain People with Disabilities

Postage stamps with aroma could affect the health of sensitive people


On January 7th, German Minister of Finance, Dr.Schaeuble, presented the new charity postage stamps to Federal President Horst Koehler and Ms. Donata Freifrau Schenck zu Schweinsberg, President of the Bundesarbeitsgemeinschaft der Freien Wohlfahrtspflege (a federal association of welfare organizations). The unique feature of these stamps for this year is: They are fruit scented – blueberry, strawberry, lemon and apple. The scenting agents are micro-encapsulated and are not supposed to be released until they are rubbed.

The perfumed stamps release a scent even without being rubbed

CSN wanted to know whether the stamps really do not smell until being rubbed and arranged to get samples of the scented stamps. As we asked to buy the new charity stamps, the lady behind the post office counter pulled out an extra folder and remarked almost devoutly, “Oh yes, this are the new perfumy stamps.” She took out a sheet of stamps which showed blueberries and delightedly announced: “Wow, these really can be smelled without rubbing!”

Two welfare stamps were purchased by CSN and examined carefully. Both stamps give off a smell without being rubbed with the finger. Strictly speaking, the strawberry-stamp emits the smell of a cheap toothpaste with strawberry flavor, and the odor of the lemon stamps are a reminder of a toilet cleaner with an artificial lemon aroma. It smells nothing like a natural fruit aroma. The lemon scent grew stronger after the stamp was left at room temperature for a short while. CSN refused to activate the odor by rubbing. It can be assumed that the smell of the stamps will grow by the inevitable friction of the letters during transport and by running them through the sorting system at the postal hubs. Therefore it is quite possible that the perfumed stamps will contaminate other mail.

CSN would like to know if the applied scents were tested for their health compatibility, and which safety criteria and methods they used for the tests. Was their safety criteria the tolerable toxic load for an average healthy adult or was it the tolerable toxic load for the weakest, i.e. for an embryo? Did they test the plain aroma agents or the printing ink equipped with the aroma? Has the material of the stamp an effect on the compatibility? The information of the Bundesdruckerei (German federal printing press) suggests that first amounts of the scents were emitted before even the printing process was completed.

People with asthma, allergy to scents, sensitivities to chemicals, and persons who respond severely to scents could be affected by this advertising stunt.

As an answer, at January 11, CSN wrote the following open letter:


Perfumed Postage Stamps Constrain People with Disabilities

Dear Mr. Federal President Dr. Horst Koehler,

Dear Ms. Frau Donata Freifrau Schenck zu Schweinsberg,

Dear Dr. Wolfgang Schaeuble,

On January 7th, you shared the presentation of the new charity stamps issued by the Ministry of Finance, which emit scents of apple, strawberry, blueberry and lemon when rubbed. We want you to think about that at first glance simpatico idea, and we politely request you Dr. Schaeuble, to withdraw these postage stamps from circulation as Minister of Finance, because there are groups of people with certain disabilities and health disorders, who would be at risk if exposed to these scents.

Wouldn’t it be ironic, if some of those people who should benefit from these charity stamps will be harmed, by putting them in circulation? Do you realize the critical position of the German Federal Environmental Agency (UBA/Umweltbundesamt) regarding scents? The UBA points out that scented products should be avoided in public areas. The German coalition for allergies and asthma the DAAB (Deutscher Allergie- und Asthmabund e.V.) assumes about 11 percent of general population, that was actually a good nine million cases, affected by olfactory hypersensitivity for scents (according to Meggs et al. 1996). They postulate warning signs for scented rooms.

Is it appropriate to characterize those as people with disabilities who respond to scents with health troubles?

According to the ‘Americans with Disabilities Act’ (ADA), an individual with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

The ‘Convention on the Rights of Persons with Disabilities’ (UN-convention) which was signed by the German government on March 30, 2007, defines persons with disabilities as those, who have long-term physical, mental, intellectual or sensory impairments which may hinder their full and effective participation in society on an equal basis with others.

Perfumed postage stamps limit the lifestyle of allergic, asthmatic, chemically diseased and other sensitive persons in an unreasonable way. This violates the UN-convention and does not meet the protection criteria set out for people with disabilities as outlined by the ADA. Severe sensitive cases and those who suffer from contact allergies caused by scents don’t even need to smell traces of those contaminants. Unsuspecting they will contaminate their living space which often is prepared safe from toxins under difficult financial conditions.

Thus far, people with health impairments from scents were able to at least receive and open their mail without help from others. This autonomy and normality of life is taken away from them. If someone encounters physical reactions by being exposed to scents, he/she will become unable to receive mail any longer and has to depend on other people to sort this type of ‘mail bomb’ out. Possibly a whole delivery is lost because one single letter with a perfumed postage stamp has contaminated all other mail.

During the Christmas season of 2004 there was a similar campaign with perfumed scratch stickers. Contrary to the statement of a German mail service personnel, the scents are not securely locked in the ink. None can be sure that somebody rubs the stamps on the dispatch or mechanical interaction will release these substances. At that time when the mail arrived it was already fragrant and it will be again this time.

Potentially such deliveries could sensitize people who have not suffered from an allergy yet. Have the applied scents adequately been tested for that risk? Would you bet your life on their harmlessness? Did you know that most of the scents used in Germany are not tested for tolerance? According to the “Special Report on Allergies, 2000″ (“Spezialbericht Allergien, 2000″) by the German Federal Government, there are about 15 to 25 percent of general population affected by an atopic disease, that was over 20 million cases, and one-third are sensitized for allergies, that was about 27 million. Should not everything be done, to keep this data from growing?

Scents trigger a variety of physical reactions for people with this sensitivity. Depending on disease and state of health, they range from harmless irritations to life threatening conditions. The following troubles can be caused individually or in combinations:

Tiredness, sneezing, irritated eyes, redness, itching, blisters, inflammations, swelling and burning of the lips, nasal mucosa burning, burning of the tongue, toothache, cough, voice failure, labored breathing, vertigo, sickness, headache, migraine, speech disorder, disturbance of memory, permanent painful vomiting, cardialgia, tachycardia, state of shock, absence, coma.

Often, such an incident increases the sensitivity for other substances or undoes a recovery which was hardly achieved by a strategy of avoidance and healthy living over a long period.

If nothing else, artificial scents could disturb the aesthetic perception of healthy ones and never reach the sensuality of their prototypes. Lay some apples from an organic farmer in your bedroom and compare it with the odor from these stamps.

Considering all of the above, we request, that the health damage which may be expected for those people in the general population who are sensitized by scents be recognized and, as under the terms of the Convention on the Rights of Persons with Disabilities, that the circulation of these perfumed postage stamps be immediately stopped.

Kind regards,

Silvia K. Mueller, Bruno Zacke

CSN – Chemical Sensitivity Network

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We thank Christi and Jim for translation help.

Medicine needs Shift in Paradigm to focus on Environmental Medicine

Newspaper reports of chemically sensitive man

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