Life after diagnosis can be isolating for those battling multiple chemical sensitivity

For Las Crucen Fred Neumann, a retired Methodist pastor, everyday life is fraught with potential hazards. While his wife is busy watching their grandchild's sporting events, attending concerts and going to church, Neumann often must simply stay home, even though he'd like to go, too.

This is because Neumann can't be near household cleaners, perfume and cologne, scented lotions, cigarette smoke and a variety of other chemical-containing products. Just smelling them can spark an asthma attack, an episode of malaise or a temporary paralysis of his face.

"It's almost like being a leper in society," Neumann said. "You're basically an outcast."

He's been diagnosed with a condition called multiple chemical sensitivity (MCS), which, as the name indicates, means he's extremely sensitive to chemicals.

Avoiding scented products

Because many people wear scented lotions and perfumes, Neumann said he's constantly having to avoid going to public places, especially indoors. He'd love to attend church on Sundays, but has had trouble over the years finding a service in which attendees will commit to not wearing cologne and perfume. When he and his wife take a plane trip, Neumann said he must wear an industrial mask. And when they travel by car, they find hotels that have an "ozone machine," which neutralizes odors in rooms.

A study carried out by the state department of health found that 16 percent of New Mexicans reported being unusually sensitive to everyday chemicals, and 2 percent reported having been diagnosed with MCS.

Ann McCampbell of Santa Fe, co-chair of the New Mexico Multiple Chemical Sensitivities Task Force, is a medical doctor who also has MCS. She grew up with no serious health problems or allergies. And she led an active, athletic lifestyle. But in her mid-30s, she began having increasing sensitivities to food that she was eating. Her white blood cell count dropped inexplicably. 

In 1989, McCampbell's MCS set in full-throttle; something she said was a "mind-boggling experience." It became debilitating. 

"After exposures to perfume; car exhaust; laundry and paint fumes; barbecue smoke; felt pens, and even metal buttons on my jacket, I now felt woozy, nauseated, and fatigued; got a metallic taste in my mouth; had body and muscle aches; and/or my heart would race or start skipping beats," she writes on her website, annmccampbell.com. 

McCampbell graduated from medical school at the University of California, Los Angeles in 1978. But she said her knowledge hadn't equipped her to deal with what she was experiencing — which was unnerving.

"I have medical training, and I have no idea what's happening to me," she told Healthy U. 

She moved to New Mexico in 1993 and plugged into support groups of people who had similar conditions. She's encountered "disbelieving" doctors who didn't take her condition seriously. But she's found other physicians who acknowledge MCS.

There is a debate among medical professionals around MCS, sometimes called idiopathic environmental intolerance, and its validity as a diagnosis. However, there have been varying levels of recognition of the disease.

Sensitivities vary by person 

Neumann, who served for years as a pastor in various parishes in Michigan, tracks the development of MCS. The old buildings had poor drainage, prompting bad mold buildup, which "kicked my immune system into hyper-drive," he said. 

It was 2001 when Neumann began experiencing major symptoms. In 2003, a doctor in Michigan diagnosed him as having MCS.

The exact cause of MCS is unknown. 

The term comprises a range of sensitivities that are different for each person, said McCampbell. Some people with MCS also have reactions to mold or pets. But the "unifying factor is that chemically sensitive people experience the onset and/or exacerbation of their symptoms following exposure to chemicals," she writes on her website.

The condition is not the same as an allergy. But people with the condition have been shown to have higher levels of inflammatory markers in the blood, said McCampbell.

Neumann said he doesn't react to natural products, such as lavender. But man-made chemicals, which are rife in the industrial age, are triggers.

McCampbell said there's a "rain barrel" idea that theorizes each person has a certain capacity to tolerate exposure to chemicals. And bit by bit, that disappears, until one last figurative drop in the rain barrel causes it to spill over. And the person's capacity to tolerate chemicals is gone.

Growing support

In the 1990s, McCampbell and other MCS advocates were part of a push that led to the state Legislature calling for state government to examine the issue. Also, a series of seven related bills was passed in 1997.

"We've worked to try to raise awareness about MCS and the hazards of a lot of common products that people use that are more hazardous than anybody realizes," McCampbell said.

For many people afflicted with MCS, the best treatment they've found is to avoid the offending chemical triggers. For Neumann, that means he stays home a lot. And for his wife, Kay, she's become accustomed to a busy life without her husband being able to do much with her outside their home. That's disappointing, she said, because they'd looked forward to retirement as a chance to live an active lifestyle.

Fred Neumann's condition forced him to leave ministry. He wasn't able to be present at services where people wore perfume and cologne. Even when requested to stop, some parishioners continued to do so. 

"It's one of those things people don't understand," Kay Neumann said.

The couple, who moved to Las Cruces in 2013, has had trouble finding a church to attend that offers "fragrance-free" services. But Fred Neumann said he learned recently that a Methodist church in the city is going to attempt to host one. He has worn a respirator in the past to some services, which helps, but tends to be a distraction to other attendees.

McCampbell said the MCS Task Force has had members from much of the state over the years, but not from Las Cruces. She'd welcome participation from residents with chemical sensitivities from the southern part of the state.

Neumann said he's interested in starting a support group for people in Las Cruces who've been diagnosed with MCS. He wants to raise awareness about the condition, and he hopes the public will be more considerate to people who are sensitive to chemicals.

Diana Alba Soular may be reached at 575-541-5443, dalba@lcsun-news.com or @AlbaSoular on Twitter.