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A family that takes food allergies seriously

Urges Congress to OK guidelines

Peter, Zoe, Kym, and Spencer Cohen The Cohens - Zoe, 13, and Spencer, 16, and their parents Peter and Kym - went to Washington, where they discussed food allergies with Representative Edward J. Markey. (Barry Chin/Globe Staff)
By Lisa Zwirn
Globe Correspondent / October 21, 2009

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NATICK - Imagine not being able to eat nuts, fish, soy, mangoes, bananas, carrots, broccoli, and lettuce. This is the reality for Spencer Cohen, 16, and his sister, Zoe, 13, who recently went to Washington to talk to members of Congress and advocate for more research into the condition that affects their daily lives.

Eighty children, ages 6 to 18, from 23 states were chosen by the Food Allergy & Anaphylaxis Network to participate in the third FAAN Kids’ Congress on Capitol Hill a few weeks ago. The children and their families demonstrated their support for a pending bill, the Food Allergy and Anaphylaxis Management Act, which provides voluntary national guidelines to help schools safely manage the risks involved with food allergies.

“The purpose of the bill is to have these guidelines available and have some uniformity across the country,’’ says Dr. Julia Bradsher, CEO of FAAN, which is based in Fairfax, Va. Kym Cohen, Spencer and Zoe’s mother, says that compared to other states, “Massachusetts is pretty progressive when it comes to managing food allergies in schools.’’

For the kids, the most rewarding part of the trip was being able to tell their representatives how food allergies affect them. The Cohens met with Representative Edward J. Markey and an aide to Senator John Kerry, both of whom support the proposed food allergy bill. Spencer says it was important “to put Zoe’s and my face, and other kids’ faces, on [the issue].’’ Zoe adds: “They don’t see kids that often on Capitol Hill.’’

There is no cure for food allergies. “It’s just avoidance,’’ says Spencer, a junior at Natick High School. “I have to be extremely responsible with what I eat. If it’s unmarked, I can’t eat it.’’ Children (and adults) with severe allergic reactions, such as swelling of the throat or tongue and trouble breathing, can die within minutes if not treated quickly, typically with epinephrine. Both Spencer and Zoe, an eighth-grader at Natick’s Kennedy Middle School, carry an EpiPen with them.

According to FAAN, approximately 12 million Americans, including 3 million children, suffer from food allergies. Among children, the numbers grew 18 percent from 1997 to 2007, based on a 2008 study by the Centers for Disease Control and Prevention. Eight foods - milk, eggs, peanuts, tree nuts, wheat, soy, fish, and shellfish - account for approximately 90 percent of food-allergic reactions in this country.

Food allergy is not food intolerance. Intolerance does not involve the immune system and is not life threatening; allergies represent a constant threat. Kym explains that she used to liken Spencer and Zoe’s allergies to Superman’s vulnerability. “This is your kryptonite,’’ she used to tell them. “You can use your knowledge to keep yourself safe.’’

The children’s father, Peter Cohen, says, “I don’t want to minimize the impact that their allergies have on them, but our kids, like most children with challenges, have adapted remarkably well.’’

At home, the kids eat meat, chicken, pizza, pasta, and rice dishes. Kym rotates vegetables to lessen the chance they’ll develop allergies to the remaining varieties they can eat. Restaurants are a problem because of cross-contamination. French fries are fine, but not if they’re cooked in the same fryer as fish. Ice cream is usually safe, but not if someone accidentally dropped chopped peanuts on it. The family gives high marks to the P.F. Chang’s chain for being very allergy friendly. “They’ll specially make dishes,’’ says Kym, “and a sous chef follows the food through the kitchen.

“I’m always in search of products they can eat,’’ she says. At the supermarket, she reads product labels even if the package is familiar. “Just because you can eat Cocoa Puffs yesterday doesn’t mean you can eat them today,’’ she says, explaining that companies constantly change recipes and the underlying ingredients. Zoe and Spencer are responsible for reading the ingredient lists of everything they eat outside the home.

“We’re kind of making it sound that allergies dominate our lives,’’ says Zoe. “They don’t.’’ Allergies may dictate what they can and can’t eat, but thankfully they don’t interfere with Zoe’s interests in singing, dancing, and attending Camp Pembroke in Pembroke for the past four summers, or Spencer’s playing on Natick High School’s baseball team.

The 16-year-old hopes that one day there will be a cure or a pill he can take before eating allergenic foods the same way there are pills for people with lactose intolerance.

“I would really like to eat a Reese’s Peanut Butter Cup,’’ says Spencer.

For more information on The Food Allergy & Anaphylaxis Network go to www.foodallergy.org.