Oklahoma Mastocytosis Society - Awareness




So Sensitive to Stings, He Covers Himself Outdoors
Joe Tornatore’s condition worsens his body’s reaction to insect
bites. After two brushes with death, he wears a protective suit.

Philadelphia Inquirer
By Will Van Sant
Monday, October 1, 2001

In Joe Tornatore’s world, every bee is a potential killer. 

The sting or bite of any venomous insect, for that matter, is capable of sending 39-year-old newlywed to his grave.

Since twice being hospitalized with stings during the summer, Tornatore does not go outside to play with his children, stroll with his wife, or even visit the mailbox without putting on a beekeeper’s protective suite.

“I’m anxious to go outside,” he said in the living room of his Blackwood house, which came with three acres of wooded land when he bought it in May. “It’s crazy to think that something so small could take you out.”

Tornatore has a rare skin disease, Urticaria Pigmentosa. There is no known cure for the condition, which produces small brown lesions on the skin and an abundance of a type of cell that greatly increases his sensitivity to stings. He also has developed separate allergic reactions to certain stinging insects, making the virulence of his response to a sting even greater.

Tornatore, whose Urticaria was diagnosed when he was 22, went 17 years before being stung and learning his condition could produce severe anaphylactic shock after an insect’s attack. Symptoms of anaphylactic shock include constriction of breathing passages, alterations in heart rate, and a drop in blood pressure.

About 50 people die each year from insect-sting reactions in the United States, according to the Food Allergy Network, and as many as 200 die from reactions related to good allergies.

On June 12, Tornatore, a community social worker in Gloucester County who works with the mentally handicapped, was clearing brush behind his home. He saw yellow jackets circling to his right before they struck.

Tornatore ran toward the sliding doors at the back of the house, five stings on his claves and thighs. Thinking he had found safety, he went to the kitchen, poured himself a cup of coffee, took a sip—then passed out. “The paramedics basically saved him,” said his wife, Diane Goodfellow, who called them.

After treatment at Virtua-West Jersey Hospital Berlin in Camden County, Tornatore was released that day with a prescription for epinephrine injectors. Epinephrine is an antidote to anaphylactic shock.

Although it had been harrowing, he said, he did not connect his reaction with his skin condition. That would have to wait until after his second hospitalization.

On July 15, he was putting up a swing the in backyard. Tornatore’s and Goodfellow’s children—two from his former marriage and two from Goodfellow’s former marriage—were there. He reached with an ax to cut off a sapling and was stung once on his left calf and once in his neck.

This time, the reaction was more acute. He staggered into his house, sweating, disoriented, his heart beating furiously. He made his way to the medicine cabinet and reached for his epinephrine injectors, which are meant to be plunged into the meaty part of the thigh.

Holding the device backward, Tornatore accidentally injected himself in the thumb. He veered toward unconsciousness; the family knew time was short.

“I wasn’t even going to call 911 this time,” Goodfellow said.

She ordered the children, ages 6 to 10, into the couple’s minivan. Tornatore grabbed for an epinephrine injector stored in the glove compartment, and this time he used it successfully.

“I didn’t think he was going to live,” Goodfellow recalled.

En route to Kennedy Memorial Hospitals-University Medical Center/Stratford, Goodfellow came upon an auto accident. Leaning on the horn she navigated the van through barricades and past police and pulled up to the ambulance at the scene.

The emergency medical technicians, Tom Patricelli and Derrick Jacobus, looked at Tornatore, who was blue and swollen. “They recognized the life threat, ordered another ambulance for the accident victim, and rushed him to the hospital,” said Tom Eden, Gloucester Township’s emergency medical services coordinator.

Their quick decision may have saved Tornatore’s life. By the time he made it to Kennedy, he was in cardiac and respiratory arrest. He spent 30 hours on life support and the next five days recuperating from anaphylactic shock in the hospital.

The ordeal left him suffering from pneumonia and a partially collapsed lung. “First, I was happy to be alive,” he said. “And then I got angry. It’s hard to accept what has happened to me.”

“His is a very unusual problem,” said Paul Atkins, an allergy and immunology specialist at the University of Pennsylvania Medical Center who has begun treating Tornatore.

Everyone’s body has what are called mast cells, which release chemicals that lead to allergic reactions, Atkins said. Because of his urticaria, Tornatore has perhaps 100 times the number of mast cells as a typical person does, Atkins said.

He said he considered Tornatore’s donning of the beekeeper’s suit when venturing out of doors a justifiable precaution. “He has had some very severe reaction,” Atkins said.

Tornatore’s attempts to find a protective suit that he could wear underneath his clothes were not successful. All the materials were too thin or loosely woven to block a stinger.

In the beekeeper’s suit, he has been mistaken for an astronaut by children in supermarkets, for a hazardous-waste cleanup man by store owners, and for a mosquito-control specialist by a clerk in the Gloucester Township municipal building.

“I stick out. I look strange,” Tornatore said. But he added: “What people think, I don’t really care.”

The suit makes him feel safe, he said, but it is also an extension of the prison he now lives in because of his condition.

“My skin misses being outside and feeling the sunlight on it,” he said. “I just want to say to heck with it some days and run outside without my shirt off or something.”

On Aug. 4, Tornatore and Goodfellow married. The children carried silk flowers so as not to attract insects, and Tornatore, for the first time since being released from the Stratford hospital, went outside without his beekeeper’s suit to attend the ceremony.

“I just said, ‘God is not going to take me on my wedding.’”



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