Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
 
 
Facebook
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
PDF Application Form (PDF, 242KB)
Why become a member?
 

A 'clean refuge' combats chemical sensitivity disorder

Wednesday 25 May 2011

From US newspaper the Star Tribune:

 

Julie Daugherty
Julie Daugherty

A 'clean refuge' combats chemical sensitivity disorder

Article by: ALYSSA FORD , Special to the Star Tribune
Updated: May 22, 2011 - 1:25 AM

Plagued by chemical sensitivities, a Minnetonka woman builds a toxin-free apartment atop her garage.

If Julie Daugherty spends as few as 20 minutes around a bonfire, the next morning she feels like she's been on an all-night bender. She wakes up feeling foggy and disoriented, and has a hard time remembering nouns. "It's like I'm brain-damaged," she said.

If she spends time in a house lined with fiberglass insulation, her skin and scalp start to itch. Flame retardants, found in most upholstered furniture and mattresses, make her skin burn with irritation. If she inhales formaldehyde, a chemical found in most particleboard and plywood, her lungs tighten and ache, and it's impossible for her to sleep. Sometimes she gets eczema patches on her skin. Sometimes red welts bloom on her face.

Daugherty has multiple chemical sensitivity disorder (MCSD), a complex, chronic and controversial environmental illness believed to be triggered by exposure to chemicals or toxins. The Chemical Sensitivity Foundation estimates that between 9 million and 18 million Americans have the disorder.

But Daugherty is luckier than most because she and her husband, equine feed company executive Rob Daugherty, have the financial resources to aggressively address the problem by creating safe, toxin-free spaces for Julie.

The latest is a 1,600-square-foot apartment that includes a small sitting room, a banquette eating area, a kitchenette, bedroom and bathroom. The dwelling, which sits atop the Daughertys' Minnetonka garage, took more than two years to complete and involved more than a dozen professionals, including a specially trained HVAC consultant, Brad Johnson, owner of Prairie West Companies, Eden Prairie. The Daughertys' environmental consultant, Mary Cordaro, Dana Point, Calif., described the apartment as the nation's "most complete" conventional build-out for a person with multiple chemical sensitivities.

"I've got a three-ring binder that's about 6 inches thick," said Deb Carney, project coordinator at Erotas Building Corp. in Excelsior. "The whole binder is just for Julie's apartment."

Julie Daugherty wasn't always so sick. For most of her life, she was in "terrific health," she said. But in 2001, three years after they moved into their former house, something shifted inside her body. Julie started having back-to-back sinus infections. Then she developed chronic sinus disease and underwent endoscopic sinus surgery.

Her three youngest children, Lauren, Meghan and Alec, also began to have serious sinus problems. (Two older sons, Chad and Sean, were already at college.)

Her husband, Rob, had badly irritated eyes. Lauren -- usually an exceptional student -- took to sleeping 23 out of 24 hours, and barely graduated from Blake School because she couldn't stay awake.

On a premonition, Julie had her husband knock a hole in a wall of their former home in Shorewood. Behind the designer wallpaper, the Daughertys found a pattern of black spots, drifting down the wall. Julie felt her whole body itch. "It's black mold!" she said.

Within days, the family moved into a hotel. Over the next several months, the Daughertys claimed their insurance money, cleaned up the mold and sold the house with a signed disclosure. Then, in 2003, they bought another house in Minnetonka, this time testing the property for mold.

But as the Daughertys soon discovered, just living in a mold-free environment wasn't enough for Julie. She started to feel short of breath and itchy. "It was like the whole inside of my body was itching," she said. Hotel rooms, too, were now irritating, and she retreated to her car, where she slept with her seat pushed back, summer and winter.

"It's been difficult," said Rob, who even bought his wife a 1956 Airstream trailer at one point, thinking that perhaps she could sleep somewhere other than her car. (It didn't work -- the Airstream also made her itch.)

To "fix" the house, the Daughertys ripped out all the fiberglass insulation and replaced it with environmentally friendly foam insulation. But trace amounts of flame retardants in the foam still irritated Julie's lungs, so the Daughertys installed two state-of-the-art air-filtration systems to replenish the house with outside air every three hours. In 2007, the family also broke ground for a toxin-free home in Florida, where Julie now lives during the winter.

Even with all the improvements and the winter reprieve, Julie has had to maintain a bizarre lifestyle. For years, she kept her apparel in her mudroom, so she could run in, change quickly, and retreat back outdoors. "I can change clothes faster than a Marine," she said. She became adept at organizing her life from her car, even doing the prep work for dinner out of her trunk. In the summertime, she sets up residence on her three-season porch. Thankfully, she says, she has progressed to the point where she can sleep most nights in a flame-retardant-free chair in her living room, snuggled with her hypoallergenic West Highland Terrier, Zoe.

Finally, relief.

But the new apartment, furnished completely this month, offered Julie the first opportunity to sleep in a bed year-round in almost a decade. The walls are crafted of DragonBoard, a magnesium oxide-coated fibrous building material. The insulation is made of recycled blue jeans. The walls are coated with clay.

Building the apartment was an exceptionally complex process, according to Carney. All demolition areas had to be exactingly tented off with plastic sheeting. "The workers wore protective fabric suits that they discarded at the end of the workday, to avoid contaminating any spaces that Julie might come into," said Carney.

The simple suite (designed by architect Andrea Swan, Swan Architecture, Minneapolis, and interior designers Jenn Taft and Greg Walsh, Walsh Design Group, Minneapolis) is filled with dark-stained wood and natural fabrics such as silk, cotton and linen. The furniture, handmade by a small studio in Chatfield, Minn. is crafted the old-fashioned way with metal springs and hardwood frames. The tufted leather chair was stained with aniline natural dyes; all the fabrics were washed four times in a special soap before they were used to craft the pillows, comforters and upholstery. The mattress is made of flame retardant-free block foam imported from Germany.

"Everything was built from scratch," said Walsh. "It was difficult to find furniture makers that were even willing to work with us. Most of them just told us to bug off."

But after three years, the apartment is complete, and Julie has a safe place to call her own.

"So far, so good," she said. "It's pretty wonderful to sleep in a bed and use a closet."

Alyssa Ford is a Twin Cities freelance writer.

 

The above, with a slide show of Julie's apartment, originally appeared here.

 


 

blog comments powered by Disqus
Previous Previous Page