Join The Conversation!

On our sister site, Fragrance Free World, we get a lot of people that find the site and send us an email. We’d like to encourage everyone to leave a comment here instead. You can leave a comment on any post.

OR, we’ve set up a couple of pages just for your Tips and Complaints:

Visitor Tips
Gripes

Tell us about how Fragrances and other chemicals are impacting you. What issues are your biggest concern? Let’s make our voices heard, there is something to be said for sheer volume!

So, Go ahead and Join The Conversation!

Barbara

Food Allergy & Chemical Sensitivity Expert Consultant | Natural help for allergies, ADHD, & asthma. | Loves to cook & create.

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10 thoughts on “Join The Conversation!”

  1. I can’t express the joy I’m feeling right now at having come across your blog. My friend sent me a link to the NYTimes May 1 2008 article “Sickened by the Office (Really)”
    I’ve been suffering from MCS for a little over 4 years now. As you know, it’s been a battle not only physically but emotionally as well. Part of the struggle is “combating” people who just don’t get it.

    I’d love to be part of the conversation!
    Thanks!

  2. Welcome, Skittle! I’m truly glad you found the blog. Feel free to comment. This blog is all about sharing experiences.

  3. I work in the Disability Services for Students Office at a college in Buffalo, NY and a faculty member down the hall wears an excessive amount of patchouli oil (2 different kinds). I am very allergic and I get temporal artery headaches, my throat swells up, etc. I went to the Administration over a year ago and I was told in writing that I was not allowed to approach this person about her smell nor was I allowed to mention the horrible smell to students in our office. During exam week May 2008, four students were nauseous and had headaches due to her patchouli oil perfume. Since I am not allowed to approach this person, my boss has asked this person several times to give me the name of the products she is wearing. It has been a year now, and I still do not know what she is wearing. I have gone to an ear, nose and throat doctor, seen an allergist, and a neurologist and still cannot give them the name of the products she is wearing. An air purification unit was installed inside our office in May 2007 but this does nothing to address the issue of the smell outside our office. On June 12, 2008, I left a phone message for Ann Curry Thompson to contact me. I have contacted lawyers in the Buffalo region, but no one wants to deal with fragrance issues.

  4. I work for a large plant. They have known about me having asthma since I was hired. I have been as a fact today I am on a unpaid leave of absence. according to what I have found in our booklets planners ect they do not show that they are allowed to do this to me unless I have asked for an unpaid leave of absence or I am being deciplined. They have had me on paid leave of absence since august 2008 at thier request, they say as of Januarary 2009 they were willing to implement a limited policy for strong scents and odors, I had agreed that would be a accomadation, They had be removed from the line and sent to HR while I was working to discuss my asthma to a cologne filled room, needless to say I have to sign some papers they say that leaves me solely responsible for all scents in the workplace and worn as personal hygiene by others there, I refuse to give up my benefits and privledges, as we all have there so in retiliation I am on unpaid leave of absence, This is a world wide Company, I have been lucky thus far and not made any mistakes, since they forseen me as a person with a disibility they have to abide by the laws. If I were to sign these papers it would remove my rights to say as an employee with my concerns, why thye have to be this way I will never figure out, the policy would help me as common sense would say, I have went to the drs, specialists, yes I have had very severe adverse reactions to smell goods worn by others. I have been told I am not allowed to discuss or ask another of thier smellgoods so How am I to know what they were wearing as they keep asking which odors bother me, I have to leave immediately when bothered and sometimes I have severe asthma attacks anyways, most were in meeting rooms.It is on record how severe I do become. anyways take care all, I have alot to do to abide by policies and procedures at work even though I am not paid, also if I don’t sign those papers by August 28, 2009 I will be terminated.Prayers for all of us with issues will be said.

  5. Thank you for responding. Since I last wrote, the person wearing the essential oil has left our building so I have had only a few headaches. The only problem I am dealing with is becaue of the year I was bothered continuously by the smell, it aggravated my scleroderma (which I had for 20 years-but only a mild version). Now I must go through testing in a month to see if the stress, etc., caused my scleroderma to go into the next stage (which wouldn’t be good for me). If it’s true, what goes around, comes around…she will eventually get her payback. she’s still wearing her strong perfune – invading everyone’s air space. I’ll keep you in my prayers also.

  6. I have pressed charges with the EEOC, have a mediation hearing on June 25, will let evry know what takes place

  7. First I want to share a link with you to a petition to ban scented products in the US Olympics and it’s affiliated organizations. This came about after being accidently spritzed in my “safer” line dance class that unlike any others I might add, at least tries to accommodate my Multiple Chemical Sensitivity. Please sign, date, and pass it on so others can help make a difference. This should effect ballroom dancing as it is an affiliated sport. It should open eyes up about this serious topic and create some public compassion as well as accommodations in other areas. Your signature counts!

    http://www.gopetition.com/petitions/ban-scented-products-in-the-olypmics-and-affiliated-org.html

    Second I wanted to share my total story which you can read below. It includes the Breathe Freely Campaign that was started by a line dance Choeographer.
    Thank you,
    Melva

    This story was printed in E-Parent Magazine and can be reprinted in non profit places as long as you mention E-Parent Magazine.

    FLASH MOB PROJECT CREATES AWARENESS OF ENVIRONMENTAL SENSITIVITIES.
    Making Multiple Chemical Sensitivity a Household Word.
    By: Melva Gail Smith

    Having severe Asthma and trying to maintain a social life isn’t easy, but when you add the disability of Multiple Chemical Sensitivity to the combination, the challenges become even tougher. As a dancer with both Asthma and MCS, I was forced to give up the sport for 15 years before finding a group of line dancers that were considerate enough to cut back on wearing chemically scented products which trigger reactions in both conditions. Dance had always been a part of my healthy life style, and I often practiced Ballroom Dancing 4 or 5 days a week, participated in showcases, and had entertained at a nursing home and mall. Just as my young life seemed to be taking off, illness struck; making it impossible for me to be around scented products that were unfortunately heavily associated with the glamour of dancing. Having to give it up entirely was emotionally devastating to me as it had always been my life’s passion. Anyone who has lost a significant part of their life’s enjoyment due to disability barriers can certainly relate to the sudden traumatic impact it can have. The experience was so gut wrenching that it was impossible to watch a movie with dancing in it without bursting into a flood of tears. The next 15 years were lived with only memories of better times, as without dance; life suddenly lost it’s spark. Knowing the uplifting emotional benefits dancing has, one of my doctors suggested that I search and keep on searching until I found a place I could dance at without having immediate major reactions. It was during a time of trial that a friend persisted to suggest places I might go. Despite the risks, I agreed to meet them at Dancin’ Nuts, a local line dance group, where many of the dancers soon become considerate of my condition. The day that I began to take classes again was so uplifting that it was like experiencing a rebirth, and I never quit going back. It didn’t take long for me to realize that there were other dancers there who had the same disability and had found it to be a somewhat more MCS friendly environment. What I didn’t know at the time was that there was going to be a silver lining to my story, as I was about to be given the unique opportunity to participate in a MCS awareness campaign that would span across the globe.

    When I heard dance choreographer Ira Weisburd was collecting videos from around the world for The Flash Mob Project and would be splicing them together into one large documentary film, I wanted to participate. I had never been in a flash mob before and it sounded like a lot of fun. A group called The Nuts and Honey’s Dance Club, that also produces a TV show by the same name on Insight Channel 98; was going to record the Kentucky segment. They were asking for dancers from the Louisville and Southern Indiana area to meet at a festival to perform Ira Weisburds line dance “Shuffle Boogie Soul,” to the song “Honky Tonk,” by Preston Shannon. Everyone was learning the steps, and it was a really exciting time for me. Getting to the film site was a challenge in itself, as it was filmed near one of Louisville’s more polluted industrial areas. This fact almost kept me from going, but I managed to get to the site and through the dance despite having both immediate and delayed reactions that went unnoticed by others.

    After the video was submitted, Ira asked dancers to share any special stories they had associated with the project, and these were posted on a website next to the video’s. When my story posted next to the Kentucky video, so many e-mails were received from around the world inquiring about the condition; that Ira created the Breathe Freely Campaign to create an awareness about MCS and perhaps promote a more breathe freely attitude. An instructor in California e-mailed the story to his entire class, as one of his students also had it. It was incredibally wonderful to see this information shared with others, and the seldom heard of MCS becoming a household word. Being in the Flash Mob Project is one of the most uplifting and significant high points of my life, and the MCS community is fortunate to have someone like Ira create the much needed campaign; which continues to generate an awareness of this disabling and often misunderstood condition.

    For those who have never heard of MCS, it is the inability of the body to readily detoxify and eliminate chemicals found in the everyday environment. These chemicals then go on to store in the liver, brain and fatty tissues of the body. Patients often detect and react adversly to very small amounts of toxins that may go unnoticed by healthy people. According to an article by Dr. Martin Pall that was published in the 3rd edition of “General and Applied Toxicology”, pages 2303-2352: chemicals can actually start a biochemical vicious cycle that makes us something like 1000 times more sensitive to these same types of chemicals . People carrying certain forms of genes that have roles in detoxifying these chemicals are often much more susceptible to this chemical sensitivity known as MCS. Unfortunately, MCS is a socially isolating condition with symptoms that can be triggered by everyday products such as lawn spray, pesticides, cleaning products, chemically scented products and a polluted environment. It can involve the respiratory and central nervous system, create musculoskeletal and digestive problems, as well as cause cognitive impairment just to name a few. With reactions ranging from memory loss and confusion to muscle weakness and pain, it can become so severe that it makes it near impossible for the patient to participate in any meaningful activity. Unlike Asthma, there are no medications to help prevent an attack. In fact, many people with MCS become homebound and live on a daily basis with chronic fatigue and other disabling symptoms. Those with a severe case can become homeless and unable to tolorate standard building material and home furnishings. Total avoidance of environmental triggers and wearing a face mask are the most common methods used to help manage it.

    Pall, who is Professor Emeritus of Biochemistry and Basic Medical Sciences at Washington State University has given dozens of scientific talks on MCS in seven countries around the world. He states that the diverse different types of chemicals implicated in MCS all appear to be able to produce a similar toxic response in the body, too much activity of certain receptors in the body known as NMDA receptors. “We have, now a detailed mechanism for how this leads to the stunning chemical sensitivity known as MCS. There have been many claims that MCS is a psychological response, but we know now that this is false. It is a biochemical and physiological response of the body to chemical exposure” Pall states.

    Asthma on the other hand is a different story in that there are medications on the market that can help prevent attacks, or stop one once it has started. While Asthma can be exercise induced, an aerobic workout can also be beneficial as it enables the lung to receive oxygen that is then transported to the blood and circulated throughout the body. One form of exercise that helps improve lung function in this manner is dance. It doesn’t matter if it is Ballroom, Zumba, or Line Dancing, as long as it is fast enough for one to reach an aerobic state. According to the National Lung and Blood Institute, “Aerobic activity makes your heart beat faster than usual. You also breathe harder during this type of activity. Over time, regular aerobic activity makes your heart stronger and able to work better.” Strenuous dance can actually double blood volume and oxygen to the brain as well as strengthen bones in both the hips and legs.

    Everyone should be given the equal opportunity to participate in dance. The many benefits of dancing has been well documented and includes but is not limited to: increased circulation, enhanced mood, improved range of motion, increased confidence, weight loss, lower risk of cornary disease, increased HDL, and the joy of social contact. “Dancing is one of the healthiest hobbies you can have.” Ira Weisburd said when asked about it’s health benefits. “I have been teaching seniors for more than 30 years and I can tell you that it has added years to their lives. I have several students in their 90’s and they are living proof that dancing prolongs life,” Ira said. To read more about The Flash Mob Project and the Breathe Freely Campaign, go to hannaian.com/sbsvideos/breathefreely.html.

  8. Hi. I have some some sunny, pleasant and fairly safe housing available in Melbourne Beach, Florida. Near almost-empty beach and clean ocean. Good for mild to moderate MCS and anyone who has problems with fragranced products. Call me if you are interested. June at 443 418 1963

  9. Thought I’d follow up on the above article on Making MCS A Household word.
    This is what has been going on since I posted it.
    I met Ira in person when his world tour visited Louisville, KY in 2011, and I can tell you that he is most sincere about creating an awareness of MCS through his Breathe Freely Campaign. Preston Shannon will be a contestant on the tv show The Voice this season. And, Ira will once again go on world tour…this time wearing a blue MCS /EHS Awareness wrist band that I obtained from dpeterson208@aol.com and presented to him. He will be speaking on MCS at his dance workshops in Australia when his tour visits there during MCS Awareness month in May 2012. Praises go to Ira and Preston as well as the good people at the Hannaian Research Institute for sharing the word, articles and links to intormation on MCS. The dance industry has became a wonderful channel to reach thousands who have never heard of MCS, finally making it a household word. Those of us in the MCS community certainly owe them a big thanks. I wish there was some sort of global awareness award they could be presented with for all they are doing. The following is a story I wrote and has a paragraph about MCS in it. This is the way I create awareness, by adding MCS to most of the articles I write.
    Blessings,
    Melva

    “Follow Your Dreams And Dance”
    By: Melva Gail Smith

    Meet Ira Weisburd, a 58 year old dance choreographer, DJ, entrepreneur from Boca Raton, Florida who has
    no intention of slowing down. In fact, this world renowned master of dance continues to choreograph steps
    that rock the linedance industry and top the charts! . Since it’s debut in the fall of 2010, Weisburd’s “The
    Flash Mob Project” has snowballed into a modern dance craze; filling dance halls and classrooms everywhere
    with fun easy to learn steps that are appealing to people of all ages. Compiling videos of groups from
    across the world dancing his steps “S.B.S. Shuffle Boogie Soul,” to the song “Honky Tonk,” by Preston
    Shannon, his plans to create a large Youtube documentary have became an exciting journey that continues
    to take this Florida enterpreneur around the globe. Receiving over 400 videos from as far as Malaysia and
    Israel during the first 4 months of the project, S.B.S. immediately soared to the number one dance in the
    world.! Fulfilling his lifelong dream of teaching dance internationally, he recently completed his 2011 world
    tour consisting of 32 Linedance workshops in only 40 days!

    Weisburd’s creative choreography and music selection is changing the way people think about linedancing.
    Once mostly danced to Country music, Linedances are now choreographed to pop, hip hop, and many other
    types of music. “The biggest misconception about linedancing is that many still believe it’s all about country.
    I realized I had an unprecendented opportunity to help change that image and let people know there is more
    to linedancing than just country music.” he said. Weisburd’s steps when paired with Shannon’s legendary
    music have became the perfect duo to get the job done.

    During his travel, Weisburd has met many people with interesting stories. After posting one such story next
    to the S.B.S. videos about a dancer who had sat out of dancing for 15 years because of a disability called
    Multiple Chemical Sensitivity, he created the Breathe Freely Campaign to help create an awareness of MCS.
    Effecting 1.5 people out of 10 in the US, MCS is the inability of the body to readily detoxify and eliminate
    chemicals found in the everyday environment. Common products such as perfumes, pesticides and household
    cleaners cause severe reactions in the Chemically Sensitive and greatly limit their lifestyle. Weisburd
    has became the first world renowned entertainer to speak out about this isolating medical condition. Wearing
    a blue MCS awareness wrist band, he plans to talk about the disability during his 2012 world tour that will
    take him to Australia during MCS Awareness Month in May.

    According to Weisburd, dancing is one of the healthiest activities you can do. Aware of the many health
    benefits of dance, Weisburd has taught seniors to dance with classes ranging from Linedancing, producing
    the locally famous Night At The Copa, to teaching Israeli, Balkan & International Folk Dancing at various
    venues. “I’ve been teaching seniors for more than 30 years and I can tell you that it has added “life to their
    years” !! I have several students in their 90’s and they are living proof that dancing prolongs life.” he said.
    “Neuroscientists already know that our brains learn best when cognitive, emotional and psychometor
    information is being processed at the same time. This is what dance is – a trifecta of powerful processing
    on three levels simultaneously!” said Dance/Movement Therapist, Lora Wilson. “In a landmark 21-year
    study published in the New England Journal of Medicine in 2003, scientists noted that dancing more than
    any other activity physical or cognitive, was associated with a lower risk for dementia,” Wilson said .

    Part of Weisburd’s success may be contributed to his early passion for music and dance. “I guess I always
    loved music,” he said recalling his Junior High School days when he played trumpet and baritone in the
    school band. ” I have always had an entrepreneurial spirit and that is what drives me. Actually, I think I have
    been taking off in new directions from the very start of my dance career. I believe I’ve always followed my
    dreams.” he added. If your dream has always been been to dance, but you have found yourself putting it
    off; your senior years may be the perfect time to start reaping the benefits of linedancing. For many of us,
    our senior years are not too late to take on a new hobby, or encourage others. In fact, many seniors find
    great joy by entertaining in nursing homes and at local events; once they have mastered a few dances. If
    you can walk, you can linedance. It’s that easy. “I know it has been said many times before, but follow your
    heart and strive to be the best at whatever you are passionate about.” Weisburd said

  10. Update: Wearing a blue MCS/EHS Awareness band during his dance workshops in Australia, Ira was able to speak about MCS and the information was well recieved by those in attendance. Ira is the first world renoun entertainer to speak out about this medical condition.

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