Morristown mom battles medical system to save daughter 

By Jillian Risberg 

She spent three years staring down daily challenges to save her daughter’s life as she battled Multiple Chemical Sensitivity (MCS).

That inspired Ana-Maria Andrade, Ph.D. to self-publish a new memoir: Together Against the Wind. A Mother Remembers.

“To give hope to families of other victims of this devastating and rare disease, and inspire them not to abandon the fight to help their loved ones,” says Andrade, who calls penning the book cathartic. 

She is grateful (to the universe) when she sees her 42-year-old daughter happily married and the mother of three beautiful girls. 

“Patricia is back to her usual self: full of energy, ready to respond to challenges, and above all, healthy,” she says.  

But it was a long and arduous road to get there.  

“My experiences those years opened the door to an otherwise unknown area… allergies,” she says it allowed her to put herself in the shoes of society’s misunderstood outcasts. “Becoming a part of this world presented me with a clearer view of the demoralizing state in which patients with MCS exist, oftentimes for life.” 

Their first year in New Jersey was the most difficult — her daughter’s symptoms, diagnosed as Chronic Fatigue Syndrome and Fibromyalgia, had no known cause. 

It was 1995 when Andrade tried to create a chemical-free environment, she swapped her daughter’s bed sheets, pillowcases and blankets with organic cotton bedding. 

“I stripped her room of even the smallest decoration,” she says while also eliminating stuffed animals that could harbor dust in her bedroom and applied the same techniques to the rest of the house. Despite the detailed decontamination, Patricia failed to improve.

To make the situation worse was doctors’ dismissive attitude towards them. 

“They all thought my daughter’s symptoms were psychosomatic, and I was crazy for believing in her made-up symptoms,” says Andrade. “My mother’s instinct guided me to do everything I could to save my daughter.” 

According to Johns Hopkins Medicine, MCS is a controversial issue as to whether it is a clinical diagnosis or not. They say many in the medical community lean towards the symptoms being physical manifestations of psychiatric illness rather than a primary medical illness. 

“Even hospitals as famous as Hopkins don’t have all the answers,” Andrade says she’s in communication with several associations in Europe and South America where there are many with MCS. “They call it the ‘invisible illness’ or ‘rare Illness.’ Environmentally ill people in those countries  survive best they can, on their own, because of the same lack of support I have found in the USA. “

So she investigated the symptoms, and found out Patricia wasn’t the lone one experiencing them, with many on the West Coast suffering.

“I learned they were caused by the impact of different (environmental) elements on the immune system,” Andrade says this gave her the hope she needed to continue the fight for an answer.

And the strength to travel with Patricia to Dallas and meet Dr. Rea, who specialized in MCS. It also meant she and her family were separated: her husband in New Jersey with their 12-year-old son, and Andrade had to quit her teaching job. 

In Texas, Patricia and Ana-Maria lived for a year in a porcelain mobile home, at an ecological camp for MCS patients under Rea’s care. 

They experimented with various alternative therapies… but mold and humidity so prevalent in Dallas, made it unsuccessful. 

Patricia’s condition became so severe she was considered a ‘universal reactor’ to each item she ate, wore and touched. 

She couldn’t count on her central line for feeding anymore, and was allergic to normal food. It was suggested she try ‘wild game.’ 

“Since her body didn’t recognize those foods because she never ate them before, she would not react to them,” says Andrade. “It was successful; she sustained herself on rattlesnake, antelope, bear, venison, raccoon, etc., — foods I ordered from a distributor specializing in wild game.”

Patricia was also allergic to clothing dye, prompting her mother to order her clothes from an organic cotton specialty catalog. 

“I washed our clothes in baking soda and white vinegar. She couldn’t stand wearing anything washed with normal detergent,” Andrade says. 

She again looked for dry conditions, this time the desert. 

In Santa Fe, New Mexico they spent another year in a house in the middle of nowhere, isolated from society and its contaminants. 

“There, I discovered new alternative treatments that restored my daughter’s health,” Andrade says.

As she recently watched a program where a well-known TV doctor presented a young woman “allergic to everything around her,” (with the same isolation from chemicals Patricia had more than 20 years ago) the doc acknowledged ignorance about the disease, and the Morristown mom felt compelled to put her story into words. 

MCS, also known as Environmental Illness (EI) is the appearance of symptoms, such as: asthma, headaches, muscle and joint pain, extreme fatigue, confusion, memory loss, stomach ache, indigestion, fainting, anaphylactic shock, etc., in a person, at any given time, due to constant exposure to low-levels of environment chemicals in (food, house cleaning products, fertilizers, gasoline fumes, electromagnetic field, etc.). 

Andrade  says she is more than happy to help anyone with questions.  

In the book, she describes arrival at a Dallas clinic and the first consultation with Rea. 

“Blood tests reveal the presence of several chemicals, including three types of gasoline,” she says the doctor asked if Patricia’s bedroom was located on top of the garage.

According to Andrade, it was, and when the car was turned on and off over the years, gasoline fumes travelled through the walls and penetrated her room, the doc said. 

She inhaled it, which is why it’s in her blood….

“… To think we have been living in that house for 10 years. I have always parked the car inside the garage, and she has slept in that bedroom this whole time.”

The illness derailed Patricia. 

“From an active person (ranked in the Northeast in tennis, great musician, choir singer) and top of her class, she became a lethargic one, sleeping 20 hours a day,” says Andrade. “At age 16, she couldn’t cope with her classes and had to quit school. She didn’t have the strength to see her friends, an essential aspect for a teenager.”

She is thankful her daughter agreed without hesitation to try all the therapies she suggested, and also feels fortunate her husband always supported her, “Even when he did not agree with my choices.”

One would never imagine the anguish Patricia endured if you see her now, according to her mother. 

“She has a normal diet and can go to restaurants. She can also wear normal clothes.”

According to Andrade, Always trust your instinct. 

“Mine has never failed me, and when I listened to it, I was able to save my daughter’s life.”

Together Against the Wind is available in both English and Spanish on Amazon.com.  

 

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