Food Allergy Survivor

I have been called: an oddity, an aberration, freakish, weird, eccentric, exasperating, and a royal pain in the ass. I have been compared to:

a hypochondriac, a walking accident waiting to happen, an alcoholic, and a menace to society. So, you might be asking about now, "Why is she such an oddity? "What does she have in common with an alcoholic?" Well, because I have an ailment, a sickness, and a silent disease that is in remission until it is aggravated by poison that I introduce into my body. My poison is not booze or drugs, but simply a food product. I don't have an addiction, but rather an affliction; a condition producing pain and distress. I won't die from over-indulgence but rather by a small, tiny drop of protein causing my body to reject itself and shut down. My intoxication is not loud and disruptive, but a quiet, smothering death. I am allergic to peanuts, and I am a food allergy survivor.

Peanuts are classified in the food family of legumes, or more commonly known as beans. 90% of all allergic reactions in the U.S. are attributed to 8 food-groups. They include peanuts, tree-nuts (such as; walnuts, almonds, pecans, hazelnuts, etc.), soy, milk, eggs, fish, shellfish, and wheat. Of these, peanuts and tree-nuts are the most common and because of the thin, flaky skin surrounding the nut, they are the only allergens capable of spreading air-born. Close to 3 million Americans are allergic to just these alone. There are at least 160 other foods that account for the other 10% of allergic reactions to food. Additionally, there is a "second tier" of foods that also seem to cause allergic reactions. These include some of the seeds, namely sesame, sunflower, and poppy. An estimated 200 deaths a year are attributed to food-allergic reactions.

Food allergies are on the rise and have not slowed down! New studies show that over 11 million people, or roughly 1 in 25 Americans, have now been diagnosed with one or more food allergies; over half of them are children. Many young children who are allergic to peanuts are also allergic to some of the tree nuts. Unfortunately, they have inherited the allergic genes, called IgE antibodies, and are prone to develop other allergies. Therefore, it is recommended that these children not be exposed to tree nuts because of the high potential of developing these additional allergies. Approximately 7% of children younger than 3 years of age experience food - allergic reactions. Fortunately, after the age of 7, most children "outgrow" their food allergy. The exception is with peanuts, which is highly unlikely to be overcome. Overall, about 85% of milk, egg and soy allergic children appear to outgrow their allergy. Because infancy is a particularly vulnerable period for the allergy-prone newborn, delaying the introduction of the most allergenic foods has been supported by researchers and strongly recommended by most nutritionists. Therefore, doctors now recommend that children under the age of 2, not be exposed (even through breastfeeding) to most of these food groups mainly because they haven't yet built up their immunity to them.

These 8 food-groups are the leading cause of anaphylactic shock, a severe, life-threatening reaction that can occur suddenly and without warning when a person is exposed to a specific allergen. It is almost inconceivable to believe that it can take just one bite to trigger an allergic reaction. For most, including myself, this insignificant amount can be as minute as a grain of sugar to be considered fatal. These incessant allergic reactions account for thousands of emergency room visits each year. Anaphylaxis is brought on when the allergen enters the bloodstream, causing the release of chemicals throughout the body that try to protect it from the foreign substance. Therefore, the quantity of toxic protein that attacks the receiver is not the problem. Rather, the bodies' own chain reaction, which shuts down system after system and indiscriminately smothers our life, is the threat.

Food is not the only cause of anaphylaxis. Other common triggers are: Stings from bees, wasps, hornets, yellow jackets, and fire ants. Also, certain medications such as antibiotics (most commonly penicillin), as well as seizure medications, muscle relaxants, and anti-inflammatory agents are included.

Anaphylaxis has existed for many centuries. The first report, in 2640 B.C., described the sudden death of the Egyptian pharaoh, Menes, after a wasp sting. However, it was not until the early 1900's that medical science began to understand the causes of sudden allergic emergencies.

Anaphylaxis can affect various organ systems, including the skin, upper and lower respiratory tracts, gastrointestinal tract, and the cardiovascular system. Reactions can be mild to severe occurring within minutes of ingestion and lasting up to 4 hours after exposure. Symptoms can include the following:

" Itchy eyes, ears and skin

" Hives and welts on the skin

" Tingling in the mouth

" Swelling of the lips, tongue, and throat

" Wheezing, shortness of breath, coughing and difficulty in breathing

" Abdominal cramping, vomiting, and diarrhea

" Headache and a

" Drop in blood pressure that leads to a loss of consciousness, heart failure, and possible death.

The medication of choice for treating such severe allergy reactions is Epinephrine, also called Adrenaline. It is a hormone that is naturally produced by all of us in the adrenal glands, hence the name. These adrenal glands release adrenaline in response to stress, sometimes referred to as the "flight or fight" response. An injection of adrenaline is therefore a way to give a higher dose of something our bodies are already making. It works directly on the cardiovascular and respiratory systems to counter the potentially fatal effects of anaphylaxis. The drug essentially works by first constricting blood vessels that reduce the swelling in the skin and/or, more importantly, the airway. Second, epinephrine is a broncho-dilator, which serves to reverse any muscle spasm that occurs in the airway. And third, it helps to prevent or reverse the severe drop in blood pressure by improving the pumping ability of the heart. The sooner the insidious allergic reaction is treated, the greater the likelihood of survival.

On a national level, FAAN, The Food Allergy & Anaphylaxis Network, a non-profit organization was established to increase public awareness about food allergies. FAAN has made great strides in regulations, policy changes, and new legislation throughout the country. FAAN along with many local support groups have been triumphant by informing people what they can do to lessen the risk of an accident, and to prepare proper emergency procedures. Through FAAN's unending efforts, now more than 40 states now authorize Emergency Medical Technicians (EMTs) and Paramedics to carry and administer epinephrine. Availability of epinephrine in schools is another key advocacy issue for FAAN. To date, more than 30 states have adopted laws or regulations to allow students to carry prescribed epinephrine during the school day.

One major area that is extremely difficult to control is food cross - contamination. This occurs when the specific food allergen falls into another food product or a utensil is used for more than one food item. Food cross - contamination is only controllable within the household, at best. Therefore, families with food allergic children are extremely limited when eating out at restaurants and certain activities. These may include birthday parties, baseball games, sleepovers, summer camps, picnics, restaurants, the circus, and other social events. Adults with food allergies go ever further to avoid: shaking hands, potluck dinners, and bake sales. Knowing that you can unintentionally contaminate someone with a food allergy simply with the touch of your hand can be life saving information. Note: If you have just eaten a handful of peanuts, please do NOT shake my hand or give me a hug.

Because physicians, schools, and scientists around the world are reporting an increase in the number of food-allergic patients in the country, we must try to decrease the occurrence of these reactions. And for each additional exposure one is subjected to, the reaction increases in severity within the body. Since there is no cure, the only way for patients to manage food allergies and prevent an allergic reaction is strict avoidance, making it necessary to read all ingredient labels all the time. This includes ingredient labels for the food we intend to eat, personal products we place on our bodies such as lotions and shampoos, pet and bird foods, and even candles we burn.

Nationally, FAAN has been instrumental in advocating changes to the food ingredient labeling industry. The next time you are at the grocery store, take a moment and glance at an ingredient list. You may see such statements as: "May contain peanut traces, Produced on machinery that also produces nut products, Made on shared equipment with milk products", …etc. These various warning labels were introduced and developed because of the successful lobbying efforts of FAAN. Although food manufacturers are finally taking notice of the dangers of mixed ingredients and cross - contamination, these advisory statements are voluntary, and as a result, there is no standardization of messages and no rules for when these messages can or should be used. Even though they are constantly reminded that children are dying from eating their products, they have stopped short of their ability to help prevent such tragedies by only stating, "may contain" in the label warning. In order for those with food allergies to avoid a reaction, they must be able to understand and trust the information on the ingredient statement. Government agencies and the food industry around the world must make this issue a priority, and must work together to make ingredient statements clear, consistent, and most of all reliable. Through the efforts of FAAN, The Food Allergen Labeling and Consumer Protection Act (FALCPA) has been introduced into both the U.S. House of Representatives and the U.S. Senate to enforce these statements on labels. This is the result of years of hard work and cooperation among federal legislators, the food industry, the FDA, FAAN, and other consumer advocacy groups, as well as concerned individuals across our nation whose lives are affected by food allergy and anaphylaxis. The key to maintaining control over this allergy is persistence in inquiring about and reading ingredient labels for all foods and products. Food-allergic consumers can't manage their allergies alone, we must all work together.

As I have battled with this ailment for over 40 years, I have learned to survive by trial & error… lots of errors. Because of my various life struggles, I was asked in 1998 to speak at the FAAN national convention in Chicago. Thus, I developed a 10-step program of basic survival techniques called Life-Steps. It was designed specifically to help parents and their children cope with food allergies. I wanted to assure them that if I can do it, so can they, and has now become a standard teaching tool and promoted throughout the U.S.

My primary goal was to be able to help make a difference in their lives.

LIFE-STEPS

#1 AWARENESS - An allergic child has to be aware at an early age that they ARE different. They were born with an inconspicuous problem, which requires special precautions. Furthermore, they must know they can DIE from this affliction……in just one bite!

My mother became aware of my peanut sensitivity when I was 4 years old after taking a bite of my father's Peanut butter and jelly sandwich. Because of the severity of my reaction, including labored breathing, I had to be rushed to the doctor's office. At that time, the doctor advised my mother that it was not such a good idea to feed me any more peanuts. She indeed thought that was going to be a simple task…little did she know.

It was then that my mother understood why I didn't like, had constantly pushed away, and wouldn't eat any peanut products. I would often take a sampling of food with my finger before continuing to eat it. And many times, I smelled my food and pushed away that which was offensive to me. People with food allergies have a heightened sense of smell to help protect themselves. Luckily, my parents never forced me to eat the foods that failed my test, except brussel sprouts, of course. At such a young age, I unknowingly was aware that food was my destructive enemy.

However, it was not until the age of 6, did we realize the full extent of this food problem. I fell asleep with chewing gum in my mouth and awoke to find it stuck in my hair. Gee, you could have guessed that outcome. Well, by putting peanut butter in the tangled, sticky mess, mother was successful in getting the gum out. Unfortunately, it also caused my entire face & torso to swell and break out in a horrible, red, itchy rash. Because of this reaction, we determined that just to avoid consuming peanuts was insufficient. I had to stay far, far away from peanuts - - my foe. …And so the lessons began.

#2 EDUCATION - Learn all you can about your particular allergy. 40 years ago, we didn't have many resources. What am I saying, we didn't have ANY resources. I had to learn mainly from my own mistakes. Luckily, valuable information is now readily available. One of my many lessons was the importance of familiarizing myself with my surroundings. When I go on vacation, knowing the quickest route to the hospital can be a lifesaver. And when I went away to college, I definitely needed to know where to go for help. Starting college can be a scary and intimidating time for many students and their parents, especially for those with food allergies who are living away from their safe home for the first time. You must educate and advise your friends, professors, food service personnel, campus housing administrators, campus police, and the local health clinic that your food allergy condition can be life-threatening. During my first year of college, I did none of the above.

It was the middle of a snowy winter and on my way late to class, I ate half of a chocolate chip cookie laced with hidden peanuts. Five minutes after entering the large lecture hall, I felt so sick to my stomach, I had to immediately leave the classroom. I felt embarrassed, not wanting to get sick in front of 200 observant students. Every steep step down to the exit, I felt my knees wobble and unsteady. Now outside in the cold, I shuffled into the center of the courtyard and being new to the campus, I had no idea which way to go for help. Subsequently, I collapsed alone, afraid, disoriented, and unable to help myself. Luckily, a Good Samaritan happened along, picked me up, carried me inside, and called the campus police. I was able to inform the officer of my peanut reaction and he made the quick decision to take me 5 minutes away to the health clinic instead of the hospital, which was 20 minutes away. He knew I was in extreme trouble and in dire need of medical attention. That most critical decision saved my life. In the 80's, most life squads and ambulances did not carry epinephrine, which was the only medication to reverse my reaction and keep me alive. I finally awoke to the strong odor of pine scent in a room with white curtains and drab white walls. A nurse was gently patting my hand saying, "You had us worried there for a while dear, but you'll be just fine now."

I learned from my mistake. I also learned that I had to accept that I was powerless to change my food allergy, therefore, I had to learn how to live with it and not embarrassed by it.

#3 FAMILY & FRIENDS - They are so very needed and important. You cannot manage food allergies alone, therefore, you MUST enlist their help and support. The family must commit to watch out for one another. I can remember as a youngster, (being the normal, bratty little sister that I was), somehow bugging my big brother. I undoubtedly seemed to know how to push his buttons, as any little sister does. His way of getting back at me was to get out the jar of peanut butter, open it up, and chase me around the house. My brother always got the last word. You might call this cruel and unusual punishment…I call that growing up in a normal household with two older brothers and a sister. I knew he would never harm me, however much he wanted to at the moment.

Food allergies are not a private matter. It is a subject that requires public attention. Most of my friends know and understand my unusual problem. They will go out of their way to help, especially at parties and events. They make it a point to classify the food on the table, as either "safe," "unsafe" or questionable. My friends also do not allow an open jar or bag of peanuts to be available, knowing that would be like Russian roulette for me. On the other hand, a few of my friends thought that I was just looking for special attention & over-reacting, and they were incredulous to my warnings.

In my junior year of collage, a close friend of mine, Linda came over for a visit. She was totting a bag of peanuts under her arm into my apartment, so naturally, I asked her to take them immediately out. Linda, spirited in nature, (a red-head of course) then started to kid around with a single nut. I was caught off guard by her apathetic attitude and she scraped my cheek lightly with the peanut shell. Within minutes, I was unrecognizable as my face swelled, triple in size. Linda drove me to the hospital, shocked and dismayed, apologizing all the way, tugging at that now brownish hair. Sometimes ignorance can be dangerously frustrating.

#4 COMFORT ZONE - This is your home. Notice that I did not say "Safety Zone." For as much as you try, there is NO safe place. Nevertheless, I can still feel more comfortable in my home environment knowing there is less chance for accidental exposure. Having said that, one cannot be too complacent and let their guard down. I returned home on a visit one weekend from college, unexpectedly. The following morning, I helped myself to a bowl of cereal. After a few bites, I was baffled why I was feeling a reaction. I ate this brand of cereal all the time. But what I hadn't realized was that my creative father had mixed two different brands of cereal together in the familiar box. Once again, I was carted off to the hospital spoiling yet another morning …so much for spontaneity. A lot of sacrifices and substitutions were made within our home growing up, but I continue to believe we led a normal, happy lifestyle.

#5 SELF - RELIANCE - Children must be taught a CAN-DO attitude. I, YOU, WE can do! If these children build a foundation of independence, they will not go through life: afraid to venture from their home, afraid of socializing, and afraid of life itself. Strengthening children's coping mechanisms and building their skills is the best preparation to equip them for completing the food allergy obstacle course. From the beginning, they must manage the demands of their allergies by trusting and relying on their own intuition. Knowing that their support system will not always be around them requires responsibility for their own well-being. They must learn to have self-confidence and the courage to know what is best for them. Through a conscious effort, if one instills responsible decision-making, these children CAN-DO anything and will achieve a happy, healthy & fulfilling life.

#6 ARMOR - Simply acknowledging the threat of food allergies is not enough. One must arm their children with an action plan that diminishes the helplessness that one can feel. There are 2 forms of armor. The first is with an Epi-Pen. It is an easy-to-use, self-administered drug delivery system. This disposable, auto-injector, when simply pushed against the outer thigh, delivers a pre-loaded dose of epinephrine. The rapid action and the concealed needle minimize apprehension and provides the lifesaving medication with little or no pain. This has only been made available within the last 10 years. Until I reached my teens, there was no such thing as having your own epinephrine. My first possession consisted of a syringe and vial, which was dangerous to use. Later, I had a pre-measured, drop and load hypodermic syringe. Finally, after college, the Epi-Pen Auto Injector was available. Thank the heaven's above.

The second part of this armor is wearing a medical-alert bracelet. I have learned that many health officials are NOT well informed on food allergies. Recognition of the symptoms is especially a problem. It can be mistaken for other reactions, which may have similar symptoms. These include: hyperventilation, anxiety attack, alcohol intoxication, and low blood sugar. How can you tell someone what is wrong with you when your throat is too damn swollen to talk and you're quickly loosing consciousness? Believe me, I have been mistakenly labeled with all those diagnoses. You can never leave home without your ARMOR.

#7 Emergency Protocol - A plan of action must be in place in case of an accidental exposure, which will happen. This involves your direct family, relatives, friends, neighbors, babysitters, and school officials (teachers, administrators, and nurses). An established set of procedures should be written down and followed starting by calling 911. Make sure help is on the way. Next should be administering the Epi-Pen Injector into the outer thigh to start reversing the body's "self -destruct" mode. Furthermore, finding additional help from others allows undivided attention to the situation. And finally, because it can be extremely scary and anxious, staying calm and collective helps assure a positive outcome.

Although Epinephrine is extremely powerful, it is also a very short acting medication that stops working after about 30 minutes. In some instances symptoms will return as the drug wears off. Therefore, it is recommended that patients be observed in the hospital for a minimum of four hours after any significant allergic reaction. By the time you start feeling the effects of anaphylactic shock, not only are your systems shutting down, so too are your brain functions. What I mean by that is you start having a false sense of calmness and melancholy. During my last episode 6 years ago, I began feeling like I didn't need to go to the hospital. I thought maybe it wouldn't be as bad this time and I could just "ride" this out. After all, I had only taken one bite of an egg roll. My mother got the last word and knew that I wasn't thinking right and insisted that I immediately be taken to the emergency room! As it turned out, I had to get five separate injections of epinephrine at the hospital within a four-hour period. It seemed every time the doctor was ready to discharge me, I started to have another wave of reactions. I'm the one who had to inform the hurried physician that I wasn't quite ready to leave yet. As a result, I have come to the realization, again, that had I not been taken to the hospital, I would not have survived.

#8 PREVENTION - It is the best medicine. Prevention is also the most difficult and important life-step of all! I have learned how to avoid my allergen mostly by experience. I travel for a living and many times I may eat out for breakfast, lunch, and dinner. You might wonder how I avoid peanut oil, butter, and nuts. Very carefully, I might add. I know that I am not even safe with breakfast since The Original Pancake House uses peanut flour as an ingredient in their pancake mix…and that is only one place I know of. Even lunchmeats can be dangerous because Kahn's meats use peanut oil as a preservative. I have also found peanut products in: egg rolls, gravy, chili sauces, salad dressings, chocolates, and Asian and Mexican dishes. As you can see, I have to choose very wisely what foods I ingest. Nonetheless, living and working in the real world successfully can be accomplished with a food allergy.

When eating out, I try to explain cross - contamination to the servers and they give me one of those strange crooked looks (you know, the kind that make you nervous). For many in the general public, it is incomprehensible to understand that such a small piece of food can be so significant. I let the restaurant know that this is a LIFE & DEATH situation and that it just takes one bite to kill me. I am usually dreadfully blunt. They have to understand the seriousness of the matter and give me factual, informed answers. Most waitresses and waiters really don't know what type of oil they use to cook in and just assume it's vegetable oil. I do NOT accept assumptions! If the restaurant, nevertheless, serves me after knowing my restrictions, they are taking responsibility for the outcome. If they don't want that accountability, I'd rather they inform me that my safety cannot be guaranteed and I will go elsewhere.

#9 SUPPORT GROUPS - You can call it a buddy system. Local and national groups are used as a venue for information, awareness, training, networking, and, of course, support. Families can: share their experiences, rally for this cause, lean on each other for help, and vent their frustrations. My parents did not have the luxury of a support system. I was one-of-a-kind, or so we thought. Through the unyielding efforts of FAAN, the FDA is now providing training materials to field inspectors for allergen inspections. Health and Human Services have stepped up their efforts to protect consumers who have food allergies. And the food manufacturing industry has made significant improvements in their food production and labeling.

FAAN has also been the catalyst behind the airlines to stop serving peanut products, to allow Epi-Pens to be carried aboard the aircraft, and to train personnel on how to administer this life-saving medication. Yes, I do get annoyed when I have to listen to folks whine about not being allowed to smoke on flights anymore and now all they get served are those lousy, tasteless pretzels instead of peanuts … sigh. We now know, through a combined effort, that we can fight this battle and make a difference.

#10 FAITH - Having faith in a higher being carries you through the darkest of times. A power greater than myself has placed me here for a purpose. I may never know what that reason is; however, I do know it is not just to survive, but to somehow MAKE A DIFFERENCE.

In conclusion, being a food allergy survivor was the easy part. Now, the hard part is staying a survivor. It is a harsh reality that these children's lives, and my own are in all of our hands. Be it a: parent, grandparent, teacher, caregiver, physician, administrator, politician, or friend, together, we can MAKE THE DIFFERENCE so they can lead safe, normal lives.

The goal of avoiding an anaphylaxis reaction is a "feat" in itself. If you look up "feat" in the dictionary, it says: "an act or an accomplishment demonstrating unusual daring, skill, & endurance. A remarkable deed." I believe this definition applies to those children living with food allergies. They are daring when they leave the safety of their home, they demonstrate their survival skills taught by their parents to make independent choices, and they show courageous endurance to lead a normal life.

With either out-stretched arms or clenched fists, I am trying to help make this feat attainable for all.

Well, that's it ……… In A Nutshell !! I hope I have made a difference.

shevah~

Web links: FAAN - http://www.foodallergy.org