2015-04-17 / Front Page

Allergic to everything

South Portland woman seeks community’s help
By Duke Harrington
Staff Writer

Crystal Goodwin has mast cell activation syndrome, which makes her allergic to nearly everything. (Duke Harrington photo) Crystal Goodwin has mast cell activation syndrome, which makes her allergic to nearly everything. (Duke Harrington photo) SOUTH PORTLAND — Crystal Goodwin has not drawn a paycheck in three years. But that doesn’t mean she doesn’t work.

“For me, it’s a full-time job just trying to stay alive,” she said on Monday from her apartment at St. Cyr Court, a housing authority complex in South Portland.

In 2011, Goodwin, now 30, was working at the Opportunity Alliance Family Center helping children with mental disorders, while also attending classes in hopes of becoming a psychiatric nurse practitioner. Between work, school and friends, she led a full and active live.

But then she got sick. A lot. Starting in September 2011 she began to suffer from near constant intestinal pain. She developed flu-like symptoms that never seemed to go away. She broke out in hive-like rashes on an almost daily basis. Sometimes her face and joints swell up for no apparent reason. Eventually, doctors realized she was suffering from anaphylaxis, a severe whole-body allergic reaction to a chemical. But which one? After nearly a year and more than dozen doctors, Goodwin got an answer — all of them.

Goodwin has a rare disorder known as mast cell activation syndrome.

“The mast cells in our bodies that cause allergic reactions, they’re not working properly for me. So, they’ve constantly triggered. They constantly thinking I’m having an allergic reaction.”

You name it, and Goodwin suffers symptoms when she’s around it, up to and including lapsing into lifethreatening anaphylactic shock. Latex, cigarette smoke, nuts, perfumes, household cleaners, gluten, most processed foods, shellfish, dust, lotions, pollen, sunlight, glue and adhesives — any of these can trigger a reaction in Goodwin.

“Basically, I’m allergic to the world,” she says. “I can suffer symptoms just walking down the hall of my apartment building.”

With so many things in the environment a danger to her, Goodwin spends most days confined to her 900-square-foot apartment.

“It’s a very isolating existence,” she says.

Not that she can travel far. Her license now restricts her to daytime driving only, with no more than 25 miles per day. Just driving that short distance can wear her out, because of the focus it requires, thanks, in part, to the disease, and in part to side effects of the 35 medications she takes daily.

Goodwin’s condition is unique enough that, this past February, she appeared on an episode of the syndicated show “The Doctors.” She was not strong enough to make the trip to Los Angeles for the taping, however, and so did her interview over the Internet from her grandmother’s home in South Portland.

As a result of that show, Goodwin was offered a home of her own. Producers connected her with a Tennessee-based builder who would have given her a small home for free. It seemed a blessing, because it would give Goodwin what she needs most, an environment she can control with her own private entrance, not likely to be exposed to any of the items that put her in a South Portland ambulance for a rush ride to the hospital – sometimes as often as twice per week.

“That’s one thing I can say about all of this, South Portland Rescue has been absolutely amazing,” she said. “They’ve even stocked themselves with the special masks and medications I need and everything.”

Unfortunately, Goodwin had to turn down the offer from “The Doctors.” Because of her travel restrictions, she is pretty much confined to her native city, given its proximity to her various doctors and nutritionists. Essentially, she had the offer of a house, but no place to put it.

It’s not the first time Goodwin has had to refuse help. She found herself unable to accept Medicare, because it doesn’t cover many of the specialized medications she needs. She is now getting insurance through the Health Insurance Marketplace, but the Affordable Care Act took away her subsidies because she refused Medicare. Today, medical bills eat up more than half of the $20,000 per year she gets from Social Security. Last fall, friends and neighbors, former co-workers, and even owners of the gym she used to frequent, gathered to raise more than $7,000 to help. But the need is constant; every day a struggle.

Not long after her appearance on “The Doctors,” Goodwin was contacted by Adam Weidemann, a contractor from Peaks Island. Weidemann learned about Goodwin’s story from a friend who saw “The Doctors” episode and wanted to help.

“There was just something about her story that was so unique and so touching, I can’t even hardly explain what it is,” he said Tuesday. “But, with her being local, I knew I wanted to do what I could.”

Together with his friend who saw the show, and happens to be an architect, Weidemann said they can start the process of building a home like the one Goodwin had to refuse, if they can just get a little community support.

“Unfortunately, I’m one of those guys who still has to work for a living, so I can’t do it on my own,” Weidemann said.

That leaves Goodwin back where she started, looking for a donation of a plot of land somewhere in South Portland, or possibly a fundraising drive to buy a small lot on which Weidemann and any helpers he can round up will build a home.

“I don’t need much,” sad Goodwin. “Frankly, my apartment now is the perfect size for me. I’m just looking for help to get a small place of my own, where I don’t have to contend with smoke or detergents or perfume from neighbors, that, to put it bluntly, can kill me.”

If enough money can be raised, or a large enough lot donated, Goodwin said she’d like to add an extra bedroom for her mother, who sometimes has to care for her if she gets too sick or weak to care for herself, and maybe room for a small garden, so she can grow some of her own food, to assure freedom from preservatives.

“Right now, even a trip to the grocery store can be dangerous,” she said. “I’ll go and start to swell up, or have trouble breathing, and wonder, what did I touch? What did I walk by? Is this going to be my last grocery run?”

Anyone interested in helping Goodwin should contact her mother, Sue Goodwin, by calling 883-6360, or 232-8144.

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