The Allergy Mom® Melissa Scheichl Provides Education and Support

Melissa Scheichl

Growing up Melissa Scheichl (aka The Allergy Mom®) of the Greater Toronto Area of Ontario, Canada, had both seasonal and food allergies and her mother suffered a dangerous anaphylactic reaction to a bee sting. As challenging and scary as these experiences were, however, allergies did not become a major focus of her life until her children were born almost 16 and 14 years ago.  
Read the article here.

Making Safety Fun

Brown Daily HeraldIt’s always hard to educate a young child with allergies on how to stay safe, but an article in The Brown Daily Herald describes a new computer game that presents children with realistic scenarios related to their peanut allergy. See all the details here.

Software teaches children to manage allergies

The computer game presents children with realistic scenarios related to their peanut allergy
By Steven Michael
Senior Staff Writer at the Brown Daily Herald

 

A computer game developed to help children learn to control their peanut allergies is being tested in a pilot trial led by Elizabeth McQuaid, research associate professor of psychiatry and human behavior at the Alpert Medical School and a staff psychologist at Hasbro Children’s Hospital.

The project is a collaboration between McQuaid’s research group at Hasbro Children’s Hospital and Virtually Better Inc., a company that creates health care software.

The game guides children  through three scenarios that children with allergies often experience in school cafeterias, McQuaid said.

One of the scenarios involves the child being bullied because of a food allergy, a situation that has been reported by students, she said.

After completing the scenarios, children gain access to other games such as reading food labels to see if they contain peanuts and playing a matching game with pictures of children experiencing a specific symptom of an allergic reaction, she said.

Children also earn points in the game, which can be used to buy items for a virtual aquarium, McQuaid said.

As part of the pilot trial, McQuaid and her team will visit 32 families with children ages 8 to 12 in order to solicit feedback on the computer game, McQuaid said.

The number of children with allergies has increased over the past decade, with 6 to 8 percent of the population now affected, McQuaid said. She added that the game focuses on peanut allergies specifically because they are common and because children are unlikely to outgrow them.

While resources are available for parents of children with allergies, there fewer resources are specifically for children, and those resources tend to be passive materials like pamphlets, said Josh Spitalnick, vice president of research and director of clinical services at Virtually Better.

“Software is known to have success in achieving behavior modification in general, and the area of food allergy should be no different,” wrote Russell Settipane ’80, an allergist and clinical associate professor of medicine at Alpert Medical School not involved in the game’s creation, in an email to The Herald.

The interactive computer game is “not just providing education, which it does — it’s providing the chance to practice real life skills in a safe way on your computer,” Spitalnick said.

McQuaid said with about half of the trial complete, reaction from parents and children has been positive.

“Parents feel that it fits a need,” McQuaid said. “We hope it sparks a conversation between parents and children.”

McQuaid emphasized that the software should not be seen as an alternative to seeking medical treatment, but rather should be used to supplement food allergy management.

“As much as I can accomplish in advising a child to avoid certain foods, there is always room for improvement,” Settipane wrote.

Spitalnick said the researchers’ next steps include expanding the scenarios in the game to encompass situations such as birthday parties, sleepovers and restaurant dining and to develop games for other allergens. Researchers will then test the effectiveness of the software in a randomized clinical trial — the same type of study used to test medications, Spitalnick said.

If the clinical trial goes well, Virtually Better may sell the computer game directly to families and school districts.

 

http://www.browndailyherald.com/2013/11/06/software-teaches-children-manage-allergies/

Nancy Sander, Founder of the AANMA, Retires after 28 Years

Nancy Sander photoNovember 19, 2013
By Kristen Stewart

Whoever said one person can’t make a difference clearly hasn’t met Nancy Sander, founder of the Allergy & Asthma Network Mothers of Asthmatics (AANMA).

Though she may not have realized it at the time, the journey that would change her life and the lives of countless others began over 30 years ago. Her daughter Brooke had life-threatening asthma along with environmental and food allergies. Life was a blur of ER visits, doctor appointments, hospitalizations and medical bills.

Nancy found herself juggling responsibilities related to Brooke and her three other children with attempts at research and self-education. “Thirty plus years ago, there was no information,” she remembers. “I would drive to the National Institutes of Health library and search the card files for books and articles.”

All this changed when Brooke was five and they were referred to a research program where they met allergist Dr. Martha White at Georgetown University Hospital. There, they were introduced to tools and a treatment plan along with medications and a daily symptom/medication diary. Nancy went from blindly following what medical experts told her to do to becoming an active, knowledgeable partner in her daughter’s care.

The improvement in their lives was immeasurable and Nancy was anxious to share what she had learned with others. She typed her first newsletter at the kitchen table in 1985 little realizing what she was putting in motion.

Nancy and Dr. White created the AANMA Board of Directors with the mission they still have today — to eliminate suffering and death due to allergies and asthma. Around the same time a reporter saw the newsletter and wrote an article which led to radio and television interviews. Soon volunteers joined them and with the need so great they almost instantly became a national organization.

Nancy served as president of the organization for 28 years until her recent retirement. During that time she worked with everyone from families and medical care providers to members of Congress, state and federal agencies and AANMA staff and the Board of Directors. She received many awards and accolades but none meant more to her than the 2012 Distinguished Service Award from the American College of Allergy, Asthma and Immunology which had previously only been awarded to physicians.

As a means of replacing patient fears about anaphylaxis with strategies for confident living, Nancy and AANMA created Anaphylaxis Community Experts (ACEs). This national award-winning program was developed in partnership with the American College of Allergy, Asthma & Immunology (ACAAI) with sponsorship from Mylan Specialty L.P. The ACE Program seeks to raise awareness, reduce anxiety and eliminate deaths due to anaphylaxis through education, advocacy and outreach.

Nancy also wrote many books (including A Parent’s Guide to Asthma which she plans to update now that she has more time), children’s books and videos and worked as editor-in-chief at two asthma and allergy-related magazines.

She has seen decades of change in her time in the allergy and asthma fields—some for the better, some maybe not so much.

The good news is that answers are out there.

“We have a constellation of symptoms that if well studied by skilled experts (usually board certified allergists) the root cause(s) can be found,” says Nancy. “Over time, with a personalized plan, the patient will see a complete reversal of symptoms and develop skills needed to maintain maximum health with minimum interruption of career, academics, fitness goals or life’s pleasures.”

However, the necessary facts can get lost in a seemingly endless sea of web pages and sound bites. In particular Nancy fears some people may not realize the value of seeing an allergist, believing instead anyone can administer and read allergy tests.

So what’s a patient to do?

First of all, stay focused. For personal treatment seek assistance from board certified allergists and only reference websites recommended by experts or that leave you feeling educated and empowered.

Keep the big picture in mind as well. Support allergy/asthma organizations as much as possible. Donations of any size are welcome.

Also stay abreast of advocacy issues. The U.S. House and Senate have recently passed the School Access to Emergency Epinephrine Act and it is awaiting the President’s signature. This legislation encourages states to adopt laws requiring schools to have “stock” epinephrine auto-injectors on hand that can be used for any student or staff member in an anaphylactic emergency.

While this legislation is a significant step toward making schools a little bit safer for those with severe allergies, it’s important to note many schools already stock emergency epinephrine auto-injectors as part of their preparedness policy. Nancy encourages other schools to follow suit without waiting for the President’s signature.

In addition, as critical as this progress is, it does not decrease the need to be ready. “The legislation which many organizations and individuals have worked hard on for years will increase awareness of the importance of community preparedness but it does not negate individual responsibility,” Nancy emphasizes. “Parents and students must remember to always carry two devices and know how and when to use them.”

Above all, when it comes to living with severe allergies or asthma it’s important to realize it is possible to live a productive and meaningful life. “Bottom line for patients and parents is to set a goal or make a wish list,” Nancy says. “What would life look life if you’re not saddled with symptoms. Then make a list of what is standing between you and achieving those goals. Make an action plan to knock down barriers one at a time. Prioritize according to health first, financial ability second and happiness and quality of life will fall into place.”

A Cure for the Allergy Epidemic?

New York Times Sunday MagazineMoises Velasquez-Manoff wrote an interesting article in the New York Times Sunday Review on possible causes and even a cure for allergies.

A study in Germany found that people living on farms with livestock were exposed to “the greatest array of microbes, including fungi,” and had a much lower incidence of asthma and allergies. Read the full article here.

Will the cure for allergies come from the cowshed?

Allergies are often seen as an accident. Your immune system misinterprets a harmless protein like dust or peanuts as a threat, and when you encounter it, you pay the price with sneezing, wheezing, and in the worst cases, death.

What prompts some immune systems to err like this, while others never do? Some of the vulnerability is surely genetic. But comparative studies highlight the importance of environment, beginning, it seems, in the womb. Microbes are one intriguing protective factor. Certain ones seem to stimulate a mother’s immune system during pregnancy, preventing allergic disease in children.

By emulating this naturally occurring phenomenon, scientists may one day devise a way to prevent allergies.

This task, though still in its infancy, has some urgency. Depending on the study and population, the prevalence of allergic disease and asthma increased between two- and threefold in the late 20th century, a mysterious trend often called the “allergy epidemic.”

These days, one in five American children have a respiratory allergy like hay fever, and nearly one in 10 have asthma.

Nine people die daily from asthma attacks. While the increase in respiratory allergies shows some signs of leveling off, the prevalence of food and skin allergies continues to rise. Five percent of children are allergic to peanuts, milk and other foods, half again as many as 15 years ago. And each new generation seems to have more severe, potentially life-threatening allergic reactions than the last.

Some time ago, I visited a place where seemingly protective microbes occurred spontaneously. It wasn’t a spotless laboratory in some university somewhere. It was a manure-spattered cowshed in Indiana’s Amish country.

My guide was Mark Holbreich, an allergist in Indianapolis. He’d recently discovered that the Amish people who lived in the northern part of the state were remarkably free of allergies and asthma.

About half of Americans have evidence of allergic sensitization, which increases the risk of allergic disease. But judging from skin-prick tests, just 7.2 percent of the 138 Amish children who Dr. Holbreich tested were sensitized to tree pollens and other allergens. That yawning difference positions the Indiana Amish among the least allergic populations ever described in the developed world.

This invulnerability isn’t likely to be genetic. The Amish originally came to the United States from the German-speaking part of Switzerland, and these days Swiss children, a genetically similar population, are about as allergic as Americans.

Ninety-two percent of the Amish children Dr. Holbreich tested either lived on farms or visited one frequently. Farming, Dr. Holbreich thinks, is the Amish secret. This idea has some history. Since the late 1990s, European scientists have investigated what they call the “farm effect.”

The working hypothesis is that innocuous cowshed microbes, plant material and raw milk protect farming children by favorably stimulating their immune systems throughout life, particularly early on. That spring morning, Dr. Holbreich gave me a tour of the bonanza of immune stimuli under consideration.

We found our hosts, Andrew Mast and his wife, Laura, hard at work milking cows in the predawn chill.

Dr. Holbreich, slight and bespectacled, peppered them with questions. At what age did Mr. Mast begin working in the cowshed? “My first memory is of milking,” he said, at about the age of 5. What about his children, two straw-haired girls, then ages 2 and 3; did they spend time in the cowshed? The elder girl came to the barn at 3 months of age, he said. “People learn to walk in here.” Do expectant mothers work in the barn? “Yes,” Laura said. “We work.”

Dr. Holbreich had made his point: whatever forces were acting here, they were chronic, and they began before birth. As the sun rose, Dr. Holbreich and I sniffed the damp, fermented feed (slightly malty); shoveled fresh cow manure (“Liquid gold,” Dr. Holbreich said only half-jokingly, “the best medicine you could think of”); and marveled at the detritus floating in the air. Extrapolating from previous research, with each breath we were inhaling perhaps 1,000 times more microbes than usual. By breakfast time, grime had collected under our nails, hay clung to our clothes, and muck to our boots. “There’s got to be bacteria, mold and plant material,” Dr. Holbreich said. “You do this every day for 30 years, 365 days a year, you can see there are so many exposures.”

The challenge of identifying the important exposures — and getting them into a bottle — is a pressing one. In parts of the developing world, where allergic disease was once considered rare, scientists have noted an uptick, especially in urban areas. China offers a dramatic case in point. A 2009 study found a more than threefold difference in allergic sensitization (as judged by skin-prick tests) between schoolchildren in rural areas around Beijing and children in the city proper. Doctor-diagnosed asthma differed sixfold. Maybe not coincidentally, 40 percent of the rural children had lived on farms their whole lives.

Immigrants from the developing world to the developed tend to be less allergic than average. But the longer they reside in their adopted countries, the more allergic they become. And their native-born children seem to gain the vulnerability to asthma, sometimes surpassing it. All of which highlights a longstanding question in the allergy field. As Dr. Holbreich puts it, “What is it about westernization that makes people allergic?”

When hay fever first emerged as a common complaint among the upper classes of Britain in the 19th century — and became a badge of refinement — farmers, who were exposed to more pollen than probably anyone else, seemed relatively invulnerable to the new affliction. In the 1990s, European scientists rediscovered the phenomenon in the small alpine farms of Switzerland. A bevy of studies followed, comprising thousands of subjects across Switzerland, Germany, Austria and elsewhere. Critically, by comparing children living in the same rural areas, scientists could discount urban pollution. Everyone was breathing the same country air.

And earlier this year, some of Dr. Holbreich’s collaborators, from the University of Basel in Switzerland, made a strong case that physical activity couldn’t explain the disparity either. They had rural children wear devices that measured movement for a week. There was little difference in physical activity between farming and nonfarming children.

What matters then? Erika von Mutius, a doctor and epidemiologist at Munich University in Germany who has led much of this research, suspects diversity is important. Farms with the greatest array of microbes, including fungi, appear to be the most protective against asthma. At the Mast farm, the cowshed wasn’t more than 60 feet from the house. In Europe, scientists found that microbes waft from cowsheds into homes.

In one study, they showed that an infant’s risk of eczema was inverse to the microbial load in her mother’s mattress.

Timing seems to matter tremendously. The earlier exposure begins, it seems, the greater the protection — and that includes during pregnancy. Children born to mothers who work with livestock while pregnant, and who lug their newborns along during chores, seem the most invulnerable to allergic disease later.

Here, the farm effect dovetails with the burgeoning science on the prenatal origins of disease generally. What happens to your mother during the nine months before your birth may affect your vulnerability to many diseases decades later, from heart disease and obesity to schizophrenia.

Allergies and asthma seem to follow the rule as well.

Susan Prescott, a doctor and researcher at the University of Western Australia in Perth, has noted differences in the placentas of children who later develop allergies. A critical subset of white blood cells — called regulatory T-cells — seems relatively scarce at birth. Rather than enabling aggression, these cells help the immune system restrain itself when facing substances that are not true threats. A healthy population of these and other “suppressor” cells is important, scientists now suspect, in preventing allergies and asthma. So it seems significant that European farming children are born with a comparative surfeit of these cells. Bianca Schaub, a doctor and researcher at Munich University, has found that farming newborns have more regulatory T-cells in cord blood than babies of nonfarmers. In test tubes, these cells more effectively quash allergic-type reactions. And that suppressive ability increases with the number of different types of animals the mother tended while pregnant. The more cows, pigs and chickens a mother encounters, essentially, the more easily her offspring may tolerate dust mites and tree pollens.

Animal studies demonstrate how this might work. Some years back, scientists at Philipps University of Marburg in Germany sprayed pregnant mice with microbes originally isolated from Bavarian cowsheds. The exposure induced favorable changes in gene expression at the placenta. The pups born to these mice were protected against asthma.

This research suggests that farming mothers might benefit from a naturally occurring immunotherapy, one that preprograms the developing fetus against allergic disease. Yet how to apply that therapy deliberately remains unclear. Is “microbial pressure” what matters — a stiff microbial wind in our sails? Or do certain cowshed microbes actually colonize farmers, and favorably calibrate their immune function?

There’s evidence to support both explanations, which aren’t mutually exclusive anyway.

Before you rush to the nearest farm, however, a word of caution. Some studies indicate that if you grow up in an urban environment, occasional visits to the farm may exacerbate allergic propensities. If you haven’t matured with abundant microbial stimulation, the thinking goes, encountering it intermittently may push you into overdrive, prompting the misery you seek to avoid.

And yet, a prospective study from Denmark published this month suggests that it’s never too late. Young adults who began farming (with livestock) were less likely to develop new allergic sensitivities than rural peers who chose other professions. Existing allergies didn’t disappear. Rather, the farming environment seemed to prevent new sensitizations.

Which brings us to farm milk. In Europe, the consumption of unpasteurized milk has repeatedly correlated with protection against allergic disease. In America, 80 percent of the Amish studied by Dr. Holbreich consume raw milk. In a study published earlier this year, Dr. Schaub’s group showed that European children who consumed farm milk had more of those regulatory T-cells, irrespective of whether they lived on farms. The higher the quantity of those cells, the less likely these children were to be given diagnoses of asthma. Here, finally, is something concrete to take off the farm.

None of these scientists recommend that people consume raw milk; it can carry deadly pathogens. Rather, they hope to identify what’s protective in the milk and either extract it or preserve the ingredients during processing. Microbes may not be the key ingredient in this case. Instead, farm milk may act as a prebiotic — selectively feeding good microbes within. Another possibility is that as with human breast milk, antibodies and immune-signaling proteins in cow’s milk influence the human immune system, steering it toward tolerance.

As a whole, this research reframes the question of what prompted the late 20th-century allergy epidemic. Is the problem one of exposure to allergens, many of which aren’t exactly new to human experience? Or is the problem one of increasing sensitivity to whatever allergens are present?

The science suggests the latter. The Mast cowshed, with its rich array of microbial stimuli, probably resembles the world in which the human immune system evolved more than, say, an apartment high above Manhattan. The Amish in Indiana, who for reasons of religious faith have maintained a 19th-century-like lifestyle, may not be less allergic. Rather, during the dramatic reordering of human existence that began with the Industrial Revolution, everyone else may have become more allergic. Immunologically speaking, the farming Amish and farmers generally may more closely resemble an evolutionary norm for our species.


ROC the Day-Welcomes the Allergy Advocacy Association

ROC the DayNovember, 2013 Newsletter

Introduction

In this season of giving thanks, we are so grateful to have your interest and support in our Allergy Advocacy Association. With the new federal law passed by the U.S. Congress and Senate to encourage schools to stock epinephrine for use on any student in an emergency, we now have greater hope for the future in keeping both children and adults safe in schools.

But we will not rest on our laurels! We plan to continue our efforts on the state level. Our association has the following legislative goals: to codify into law existing regulations allowing students with prescriptions to carry epinephrine throughout the school day; to enact a law authorizing the stocking of epinephrine in all New York state schools; and to require training in the use of the epinephrine auto-injector (EAI) device for all newly certified teachers.

We also hope to fund various initiatives to educate others on the dangers of anaphylaxis through our program of awareness, alertness and action. For this we need your help. Will you join us on ROC the Day! December 11th, with a donation of any amount? See all the details here.


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