A couple of years ago, my wife, Sherri, said to me, “We need to go to San Diego for surgery.” Really? San Diego? Walks on the beach! Shamu! The zoo! It sounded like fun. OK, the surgery part didn’t – but we had not had a vacation in almost three years, and I could think of worse places to go in February. Maybe we could even make a stop and see Mickey Mouse.
Then, I remembered that we could not fly to San Diego. We would have to drive from Denver, two days out and two days back. Why would we have to drive? In addition to living daily with Multiple Sclerosis (MS) and Lyme disease, Sherri also suffers from a medical condition known as Multiple Chemical Sensitivity (MCS). Airplanes and rental cars are out of the question. Our car is an older model car and is a safe place for us.
Finding a place to stay is also not an easy task. We needed to stop for one night on the way to California and one night on the way back. It usually takes about a month for me to prepare for a trip like this. Before we leave, I fill up the car and cargo carrier with all the necessities, including gas filtering air purifiers, UV mold killers, oxygen bottles, coolers for food, sheets, towels, pillows, sleeping bags and couch cushions (in case we have to sleep in the car). We call hotels in advance to have them clean the room with baking soda and vinegar. We almost did have to sleep in the car on the way back, because the hotel said they gave away our special room. Fortunately for us, they didn’t, although the room was barely tolerable with only two air purifiers on full tilt.
We wanted to spend three nights at Disneyland and three days in San Diego. Disney was amazing. They blocked off our room in advance and did their special allergy cleaning and even provided their own air purifier for the room. Disney also turned off the fragrance generator in the hotel lobby and permanently removed the air fresheners in each of the first aid station restrooms in their parks, not only at Disneyland, but at Walt Disney World as well. They did all of this because of their world class service and because of the educational material we provided them from the Cleaner Indoor Air Campaign.
Finally, we stayed in San Diego for the surgery and recovered at the home of our great friends, Karyn Buxman and Greg Godek. Karyn is a nurse, Hall of Fame speaker and the author of the “What’s So Funny About … ” series of health humor books. Greg is the best-selling author of 1,001 Ways to be Romantic. (You can read posts from Karyn and Greg on Disability.Blog.)
In order for us to stay at their home, Karyn and Greg had to change their laundry detergent to fragrance free a few months before our visit. A week before we arrived, they started to use fragrance-free soap, shampoo, hairspray and deodorant. They also sealed in bags and hid away any candles with fragrances. We felt very honored that they would not only host us in their home, but also think so much of us as friends that they would change some of their personal lifestyle habits and choices.
The trip turned out to be amazing, because Disney, as well as Karyn and Greg, chose Friendships over Fragrance. Most people have experienced or know someone who has difficulty breathing, nausea or headaches from things such as cigarette smoke, diesel exhaust, pesticides, cleaning agents or hanging out in the laundry detergent aisle for too long. Even so, when it comes to those who report moderate to severe adverse health effects from chemicals used in everyday items, such as perfumes, fragranced laundry and personal care products, friends and family are often perplexed.
However, millions report living with various Environmental Illnesses (EI), such as Multiple Chemical Sensitivities (MCS), Toxic Injury, Chemical Injury and/or Toxic Encephalopathy. In addition to the many people who have reported worsening of allergies, asthma and COPD, others particularly at risk include those battling illness or cancer, or living with Autism or Post-Traumatic Stress Disorder (PTSD), as well as expectant mothers and babies.
Some of the symptoms reported range from mild to debilitating coughing, difficulty breathing, closing of the airways, sneezing, nausea, headaches, dizziness, weakness, numbness, fatigue, flu-like symptoms, pain, joint swelling, migraines, vertigo, fainting, behavioral and mood changes, depression, hormone dysfunctions, memory loss, cognitive dysfunctions, paralysis, seizures, swelling of the brain and more.
Surprisingly, issues with fragrances are not as rare and unusual as people may think. Research done in 2004, 2005 and 2009 by Stanley M. Caress and Anne C. Steinemann found that nearly 38 percent of Americans report adverse effects when exposed to a fragranced product. For instance, approximately 20 percent of Americans report breathing difficulties, headaches or other health problems when exposed to air fresheners and deodorizers, and more than 10 percent report adverse effects when exposed to laundry products vented outdoors. Percentages are nearly twice as high for people with asthma. With approximately 310 million people in America in 2010, that is almost 117 million Americans who have adverse effects to normal, everyday products.
It is suspected that many more may possibly live with these reactions, but do not make the connection between the fragrances and their symptoms. Therefore, it is hard to determine exactly how many more people are affected. In a 2010 study of 25 fragranced consumer products, researchers identified 133 different VOCs (volatile organic compounds). Of those 133 VOCs, 24 are classified as toxic or hazardous under at least one law.
Just taking laundry products alone as an example, the University of Washington found that all but one of the chemicals found in these products are “regulated as a toxic/hazardous chemical” under 1-7 laws. They are also listed either as a recognized or suspected carcinogen, as well as a neuro, immuno, kidney, liver, blood, developmental, respiratory, gastrointestinal, reproductive, endocrine, skin and/or sense organ toxicant. Therefore, we cannot be entirely sure what kind of havoc these chemicals and others in our environment are doing to our bodies, health, blood, organs, hormones, immune or nervous systems.
When making modifications for people living with EI, keep in mind that everyone is different. Some reactions are more severe than others; some limitations from work, stores, public places and events are more constricting than others; and some can tolerate a certain product, but not another. For example, Charlie may notice he gets moderate headaches and nausea for several hours when he is around cigarette smoke, diesel fumes or heavy perfumes, while Sara may report debilitating migraines, pain and fatigue for several days or more from the above, as well as fragranced items, such as laundry, soaps, shampoo and deodorants.
As we can imagine, people living with these conditions can experience minor to extreme limited access to public places, issues at work or inability to attend functions with friends and family. Regrettably, these barriers may lead to feelings of loneliness, isolation and abandonment when loved ones choose not to forgo the fragrance products that cause these problems. Therefore, if our loved ones are telling us they are getting debilitating migraines, dizziness or fatigue from our fragranced products, maybe we can consider simply omitting or switching them to a fragrance-free version so that our friends or family members may remain a part of our lives. Choose Friendships over Fragrances.
May is Multiple Chemical Sensitivity (MCS) Awareness Month in many states and cities across the nation. Learn more at about this topic at the Cleaner Indoor Air Campaign, check out the Friendship over Fragrances resources as well as the campaign’s downloadable posters, or watch this video for more information.
Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.
Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.
This article was first published on Disability.Blog, by Disability.Gov on April 29, 2013.
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