Teen with Multiple Allergies To Advocate in D.C.

By MONICA CALZOLARI
ONEONTA

Sixteen-year-old Devin Sailer, a student at Oneonta High School, will travel to Washington, D.C. next month to advocate for all teenagers with food allergies before the legislators and senior U.S. Food and Drug Administration officials.

He is a member of Food Allergy Research and Education, which works on behalf of the 33 million Americans living with life-threatening food allergies.

Sailer applied to be among 170 of his peers who will make their voices heard March 4-6 during “Courage at Congress: Advocate for a Cure,” which provides the opportunity to come together for two full days of advocacy and education. He will receive a stipend to assist with expenses.

Sailer is allergic to 31 different allergens: all nuts, peanuts, tree nuts, peppermint, shellfish, several environmental allergies, multiple medications and stinging insects. Exposure to any of these can be fatal.

Just one bite of a piece of Valentine’s chocolate with nuts or peanut butter could put him in a life-or-death situation.

“I participate in Teen Talks every couple of days over Zoom with other teens across the United States. This month, we talked about Valentine’s Day and the risks of dating,” Sailer said.

“For example, if I am dating and kiss a girl who just ate nuts, I can have a severe allergic reaction and go into anaphylactic shock,” he said.

Anaphylaxis is a severe, allergic reaction in which the immune system releases a flood of chemicals that cause the body to go into shock. Blood pressure drops suddenly, the airways narrow and the pulse may become weak.

Eight percent of all U.S. children have food allergies. That’s 5.9 million children. About 30 percent have multiple allergies. Sailer is in this group.

“I am extremely allergic. I am a very specialized case,” Sailer said.

He is treated by doctors at Boston Children’s Hospital.

Each year, 150-200 people die from allergic reactions to food. Food allergies send 30,000 people to emergency rooms every year and cause 2,000 hospitalizations, according to an article dated 2004 on foodallergy.org.

Sailer said, “I want to give a face, a voice and life to these statistics.”

“I also have an allergy to local anesthetics. When I go to the dentist and need a cavity filled, I cannot receive a needle to numb the pain. I just have to tough my way through the drilling,” he said.

Sailer recalls going to the emergency room about once a month when he was growing up. Now he ends up in the emergency room about once a year.

“Last December, I went to a restaurant in New York City where my family and I have eaten before. What I noticed first is that when I ate a little of the duck sauce, it irritated my throat. I also took a bite of filet mignon. It turns out that it was marinated in peanut sauce. I broke out in red, rashy hives and my airway started getting obstructed,” he said.

“I took my Benadryl® and gave myself an injection of epinephrine in the cab on the way to the emergency room. I spent the next 10 hours in the hospital before I was released. I almost died. It is a good thing that we did not board the train back to Oneonta,” Sailer said.

Former restaurant critic and author Heidi Knapp Rinella reports that “70 percent of the deaths occur while eating out at a restaurant,” according to her article “Fatal Reaction: When Dinner Turns Deadly.”

“I get nervous going to restaurants. I prefer to eat at home,” Sailer said. “I always carry allergy medicine and two EpiPens® with me at all times. My mother [Frances] also carries two EpiPens in her purse. All my relatives have EpiPens available for when I visit.”

“When I was younger, kids would tease me about my food allergies and waive peanut butter at me. They did not realize how dangerous it was,” he said.

Sailer was born in Troy, New York and went to school in Saratoga until he was 8 years old.

He recalls, “I remember having to sit by myself at lunch and sit in a corner during birthday parties and other events when food was being served.”

“Some people compare my food allergies with being lactose intolerant. My allergies are much more serious. They can be deadly. It is not a matter of feeling bloated or getting an upset stomach. If I eat a food I am allergic to, I can die,” Sailer explained.

“I also have asthma. Although it is not related to my food allergies, asthma can restrict your airways and so it is a bad combination to have both,” he said.

“I take Xolair® once a month by injection. It is not a miracle drug, but lessens the effects of my food allergies. I have been taking it for two or three years. It costs $80,000.00 a year. Luckily, it is covered by my insurance,” Sailer said.

“Not everyone is as lucky as I am,” he continued. “Some kids and families need to choose between buying their medicine or buying a house.”

These experimental drugs are very expensive, he said.

“I am very lucky to have a mother in the medical field. She is a nurse midwife. She is able to inject me with the Xolair medicine I take once a month. I am extraordinarily fortunate that I have a family and a community that supports me,” Sailer said.

“I would like to make a discernable change in the world, especially for those with food allergies,” he continued. “I am in favor of nasal epinephrine. It is not FDA approved. I would like legislature to speed up the approval process because it can save lives. A lot of kids have a phobia of needles. Nasal epinephrine is easier to administer.”

Luckily, Sailer has outgrown his allergy to coconut and scallops, he said.

Seafood allergies affect nearly 7 million people, while peanut or tree nut allergies affect 3 million people. People can develop an allergy at any time.

“Education is key. Some do not believe a food allergy is as serious as it is. Food allergies are no joke,” Sailer said. “Personally, I have an interest in government, politics and legislation. I have thought about going into law. There is a field called food allergy law. I would like people not to have two struggle the way I have.”

Rural communities tend to be poorer and more secluded. They do not have the same resources as large, urban centers, Sailer pointed out.

“I would like children to be taught about food allergies at a much younger age,” he said.