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Feb/Mar 2014 Issue
Families with food allergies and asthma pull together in emergencies
Micah Moody could sense danger in the air in Moore, Oklahoma, on May 20, 2013. With reports of an ominous tornado heading in her direction, she gathered her medication, along with some snacks and water for her kids, and took her children to the next-door neighbor’s storm shelter.
“We knew it was coming and it got really scary,” Moody says. “When it hit, it sounded like complete and utter destruction.”
Winds of more than 200 mph fiercely shook the shelter door, hurling objects against it. The tornado sucked off the shelter’s vents, showering the group inside with debris as it cut a violent path through the suburb of Oklahoma City.
When the twister finally subsided, Moody stepped outside and surveyed the damage. The entire second story of her house had been blown off and the back was demolished. Cars were perched on the roof of a nearby school with a house in flames behind it. Moody realized immediately that her family had lost their home and most of their possessions. It took her a bit longer to realize that she had lost her food.
Moody, who has an autoimmune bladder inflammatory disease called interstitial cystitis, is on a gluten-free diet to help with the inflammation. Any of her gluten-free fare that survived the tornado was covered in a soot-like substance from the swirling debris. A small tree branch driven through a box of her rice pasta drove home the point that her food was inedible.
After the twister, Moody searched for gluten-free food at food banks and church donation sites. “It was easy to find food but my kind of food was rare,” she says.ý
In the aftermath of recent storms, the food allergy community has pulled together to gather donations of allergy-safe foods throughout the country. Social media makes it easier to connect volunteers with needy families during natural disasters.
The challenge, organizers say, is to find local contacts to determine exactly which areas are affected and where to send donations. Identifying a central location that can handle truck deliveries and store pallets of food, along with a local volunteer who can organize thousands of pounds of donations, is essential.
For individuals in a storm’s path, preparation is paramount, says Mary Casey-Lockyer, RN, senior associate for disaster health services at the American Red Cross. It’s important to put a process in place before disaster strikes.
Casey-Lockyer urges families to have a plan and an emergency kit that includes water and safe, shelf-stable food. It’s also helpful to have a written checklist of what you need to grab in an emergency, such as medication or medical devices.
“You might be very upset. It could be a quick evacuation. In the heat of the moment, it’s helpful to have a checklist,” she says. “You might not think to check if your daughter’s inhaler is still in her school backpack.”
Recent devastating storms, such as Superstorm Sandy in 2012, have alerted people with food allergies, celiac disease and asthma to the risk of losing their access to a safe food supply.
Lisa Giuriceo, leader of the Food Allergy and Asthma Support Group of North Jersey, had her “ah-ha” moment after living in northern New Jersey with no power for three days after Sandy hit.
While she had stocked up on safe, nonperishable items for her daughter with multiple food allergies before the storm, Giuriceo started to panic about having enough food to feed her family, especially after she had to throw out everything in her freezer.
Shopping at a local supermarket, she spotted eight boxes of gluten-free pancake mix and multiple boxes of rice milk and piled them into her shopping cart. Then she stopped, realizing that another family might need the items. With many roads impassable and trucks not making deliveries to supermarkets, the food on that shelf might be all that was available for a while.
“I thought, we have to do something to help,” Giuriceo says.
So she worked with the offices of New Jersey Governor Chris Christie and the late U.S. Senator Frank Lautenberg from New Jersey, made calls to food banks in harder-hit areas of the state and contacted “free-from” companies, such as Enjoy Life Foods, which sent pallets of allergy-friendly products to food banks.
In Brooklyn, New York, Heidi Bayer’s home was unaffected by Sandy but storm evacuees were being housed nearby. Bayer visited the shelters to see if anyone needed special-diet food or formula.
“That’s when I realized, if something happened to my family and we needed assistance, we would need so much,” says Bayer, who has a teenage daughter with multiple food allergies.
Giuriceo and Bayer mobilized support groups, manufacturers and social media to gather safe food donations for the immediate needs at hand but they both knew there had to be a more permanent solution.
“There needed to be a better way to be prepared when these disasters happen,” Bayer says. “Sandy was one of those events that showed us what was needed.”
As a board member of the Asthma and Allergy Foundation of America (AAFA) and chair of its Kids With Food Allergies (KFA) board of advisers, Bayer was instrumental in launching KFA’s Emergency Preparedness and Disaster Relief Committee. This committee relies on volunteers throughout the United States to create contacts with food allergy support group leaders in affected areas. They ask manufacturers for allergy-friendly food donations, talk to local food banks about receiving donations, make sure people with asthma get what they need (such as a safe place to stay free of pets or mold, access to medications and breathing devices), and post the information on social networks so people can send donations or locate safe food.
In the aftermath of Superstorm Sandy when Internet service was not working and cell phone service was spotty, food banks were grateful to receive donations from the food allergy and celiac communities, says Marion Lynch, marketing and communications coordinator for the FoodBank of Monmouth & Ocean Counties. Boxes shipped to the food bank were marked “allergy friendly,” to ensure the donations were handled properly, Lynch says.
“The products were distributed through our network. They were definitely needed by many of our neighbors who were impacted by the storm,” Lynch says. “For many who suffered losses from Sandy, the economic impact will last for several years. Because these foods tend to cost more, the donations were greatly appreciated by the families we serve.”ý
KFA’s disaster relief committee was ready to help when the powerful tornado carved a path of destruction through Moore and other Oklahoma City suburbs last May.
Cami Simunek felt numb as she watched the news in her home in Piedmont, a suburb of Oklahoma City. Grateful that the devastating twister had bypassed her house, the leader of the Oklahoma Food Allergy Support Group jumped on Facebook to connect with food allergy support group leaders throughout the country to mobilize assistance.
Within two days of the tornado, allergy-safe donations started arriving at the designated relief sites—a regional food bank and a local church. Pallets of food contained allergy-free cookies, gluten-free bread, infant formula and SunButter.
“The experience of everyone sending in food and messages was overwhelming,” Simunek says. “It was a wow moment for me.”
After safely sheltering underground at a local hospital with her family, including her food-allergic daughter, Oklahoma City resident Becky Matlack reached out to assist other families with special dietary needs.
Matlack and her friend Rachel McCarty set up and ran the pantry at the local church, accepting allergy-friendly food donations. They organized the food on tables according to food allergy. One area had gluten-free items and another had food free of the top eight allergens. Matlack even put her daughter Virginia’s service dog to work, having him sniff boxes to detect peanuts. Boxes of peanut-containing foods were placed in a separate location outside of the main pantry area.
“People started to trickle in, like being at a grocery store,” Simunek says. “They were so thrilled to know that they could eat safely for the next few days.”
At first, the biggest need was for meals that could be eaten without preparation. After the initial shock, Matlack says families needed to replace expensive flours, egg replacers and pastas so they could start making their own meals again.
“Since this type of food can be so expensive, a lot of families just didn’t see how they were going to replenish their supplies lost in the tornado,” she says.
“I let people go through and pick what they needed. You can’t just give people a box of food. That doesn’t work with food allergies,” Matlack says. “Having sweet things on hand that were free of the top eight allergens allowed children to have some normalcy back in their lives.”
Getting the word out that allergy-friendly food was available proved challenging. Information about where people could find donations was posted on social media sites, including local shelter Facebook pages, but not everyone had Internet access in the tornado’s wake.
So Matlack drove to command centers, churches organizing relief efforts and Red Cross and Salvation Army locations to hand out fliers. She also took several trips in her van to deliver allergy-friendly and gluten-free donations to neighboring towns that needed assistance.
Eventually, word made its way to Moody, who was thrilled to find gluten-free hamburger buns, bread, granola bars and pretzels, along with Go Picnic ready-to-eat meals, at the local church. She brought boxes of products to her interstitial cystitis support group meetings to help others who had lost their homes or who had no power.
Moody has vowed to put a process in place before the next tornado season. She was so focused on preparing snacks and water for her kids, that she neglected her own needs, she says.
“When you’re the only one in your family who has to live with restrictions, you can feel like you’re a burden, to the point that you would just rather not eat so everybody else can,” she says. “The pantry with gluten-free donations definitely brought me quality of life. For me, it was one of the biggest blessings.”ý
When wildfires burned through Waldo Canyon in the mountainous area near Colorado Springs in June 2012, Nicole Smith, a children’s book author and creator of AllergicChild.com, faced the possibility that she could lose her home. But she was especially concerned about the health of her son Morgan, who has multiple food, environmental and pet allergies, along with asthma.
Both Smith and her husband were downtown at work when the fire threat quickly escalated, resulting in an emergency evacuation of her neighborhood. Morgan, who was 16 at the time, could see ash falling from the sky as he followed Twitter updates and watched a news conference on TV quickly end because the fire was getting too close. Smith was stuck in heavy traffic driving into red ash from the fire as she tried to get home to her son and husband, who were already packing the car with clothing, medication and coolers of food. The three wore medical masks to try to keep ash out of their lungs. As they drove away, Smith watched Morgan closely to make sure he was breathing normally.
“I was so concerned about his asthma,” Smith says. “He was wide-eyed, just like me. To see these gorgeous mountains with tendrils of flames come down them, it was just horrifying.”
There were no hotels available and they didn’t want to expose Morgan to the risk of unsafe food at emergency shelters. They’d also heard that pets were allowed in most shelters, an unhealthy situation for Morgan, given his pet allergies and asthma.
It’s important to communicate medical and dietary needs when registering at a shelter, says Casey-Lockyer at the American Red Cross. If a person has celiac disease, for example, shelter staff can secure gluten-free food for that individual. During recent disasters, shelter managers have tried to create peanut-free zones for those with peanut allergy, she says.
Red Cross-managed shelters accept service animals and often provide a co-located pet shelter for family pets. Because the shelters are usually in large buildings, such as gymnasiums, a person with a pet allergy could be placed on a separate side of the gymnasium from someone with a service animal, she says. But other shelters may have different safety procedures.
Escaping the wildfire, Smith and her family decided to stay at her mother’s home, located about four miles east in an area of Colorado Springs that wasn’t being evacuated. They had packed plenty of safe food and upon arrival, they washed all the pans and dishes in her mother’s kitchen to ward off cross-contamination. But the intense heat, along with smoky haze in the air, combined to make a dangerous situation for Morgan. There was no air conditioning in the home and opening windows was out of the question, given the smoke outside.
The American Lung Association recommends that people with asthma or other respiratory conditions try to avoid the high level of air pollutants during a wildfire by staying inside with all doors, windows and fireplace dampers shut and clean air circulating through an air conditioner. The association also urges patients to closely monitor breathing, follow an asthma action plan and consult a physician if experiencing symptoms.
A day after evacuating, Morgan woke up saying, “It feels like someone is sitting on my chest.” He didn’t have a nebulizer with him when they evacuated, only the low dose of asthma medication he takes on a daily basis for what had been termed “mild” asthma. He doesn’t generally carry an emergency or rescue inhaler, only an epinephrine auto-injector that he keeps because of his food allergies.
Smith learned that wildfire conditions could exacerbate even mild asthma. “None of this was on my radar. It was mild asthma,” she says. “We really learned a lot. Keep the nebulizer. Keep the rescue inhaler.”
She took Morgan to a local doctor’s office, where he received breathing treatments and prescriptions for medication. Smith also called their insurance company to approve the purchase of a room air conditioner for the house where they were staying.
After a few days, Smith and her family returned to their home. They discovered that a fine, black ash had seeped into their house when they were loading their cars before evacuating. They spent the next day washing down all the surfaces and walls, along with replacing the air filters that the smoky air had turned black.
A year later, when winds blew smoke from a nearby wildfire in her home’s direction, Smith kept Morgan inside with his inhaler next to him and monitored his breathing with a peak flow meter.
“We learned that maybe some of that mild asthma is a misnomer when air quality is so poor. Our experience the summer before gave us a heightened sense of awareness,” Smith says. “I knew families who just picked up and stayed in someone’s house and ate whatever food was there. It was like a big sleepover. Families with food allergies and asthma need to make massive preparation.”
Past blizzards had taught Smith how to keep her family safe and fed during a storm. She always has 72 hours worth of food in the house and she keeps medications up to date and in one location so they can be easily grabbed if the family must leave the house quickly. She also has a kit that contains items like passports, a safe deposit box key, immunization records, a list of account numbers and cash.
The city’s reverse 911 feature had alerted Smith and her family that it was time to leave their home during the wildfire. They also had signed up to their local news station’s alert system for text messages with weather warnings in their area. It was the smoke’s impact on Morgan’s asthma that took Smith by surprise.
Heidi Bayer keeps an emergency kit at the ready. It contains an epinephrine auto-injector and three days worth of food, which she checks every six months for expiration dates. She started preparing for Superstorm Sandy five days before the storm hit, stocking up on food, cooking and freezing meals, taking out coolers, stocking ice, getting cash and ensuring there was a full tank of gas in the car. Everything was by the front door before the storm settled in.
As tornado season approaches, Matlack says her emergency plan makes her feel calmer. Her family’s to-go bags contain a change of clothes, pajamas, a first aid kit, medications and a nebulizer. DVD players, portable video games and other activities for her kids also are included. She keeps a bin ready to throw into the van when it’s time to seek shelter. Hours before a tornado is forecast to hit, she packs up the van and heads to the parking garage at the nearby hospital, ready to enter its underground tunnel.
Others take similar steps, taking solace in their stash of allergy-safe supplies.
“It’s important for people to be aware and to be prepared,” Smith says. “Everyone should ask themselves—‘What would happen if I had a major fire, a major flood, ice storm or tornado in my neighborhood? What would I do and what would I need?’”
Wendy Mondello (tasteofallergyfreeliving.blogspot.com) lives in North Carolina.