Support Group for Food Allergies Offers Help and Hope by Cristina Stainkamp, Linda Nicastro & Alisha Coupe
Photo of Dr. Mayer, speaker at PAK's February 2009 lecture
Whether you're reading the newspaper, flipping through a magazine or cruising web, cable and radio broadcasts, it's likely you'll find dozens of stories on the vast array of health issues confronting today's children and families. Increasingly common are children with multiple allergies and asthma, while a lesser-known, inflammatory disease called Eosinophilic esophagitis (EE) is emerging rapidly, as well. New statistics from a 2008 study by the Centers for Disease Control and Prevention (CDC) show that food allergies are on the rise, affecting 4 percent of children, or one out of every 25, according to the Food Allergy and Anaphylaxis Network (FAAN), a nonprofit organization dedicated to food allergy education, advocacy, research, and awareness.
The new study reflects a public health concern and troubling trend that FAAN has studied for years, in the process developing a network of invaluable resources that include local allergy support groups across the country, such as Protect Allergic Kids (PAK) and Food Allergy Education and Awareness (FASE) in Long Island, NY. Educational programs and outreach efforts have led to important legislation and improved understanding of the challenges people with food allergies face. Food allergies affect families' daily lives and by extension, require constant vigilance and careful measures to ensure that reactions do not occur.
More than 12 million Americans have food allergies and eight foods account for 90 percent of all food-allergic reactions in the U.S. These top 8 allergens are: milk, eggs, peanuts, tree nuts (including walnuts, almonds, cashews, pistachios, pecans), wheat, soy, fish, and shellfish. There is no cure for food allergies at this time though research is ongoing, but there are safety measures that can help people stay safe and reduce the potential of a life-threatening allergic reaction called anaphylaxis.
"Anaphylaxis is a serious allergic reaction that is rapid in onset and may cause death," cites FAAN literature. Anaphylaxis may be triggered by food, medication, insect stings or latex and is estimated to cause 50,000 emergency department visits in the U.S. annually. At the first signs of anaphylaxis, early administration of a prescription medication called epinephrine (or adrenaline) is critical and the best defense. Antihistamines alone may not be enough to prevent the possibility of a fatal allergic reaction.
For parents of children with one or multiple allergies coupled with asthma, the risk of anaphylaxis is greater. With the possibility that allergic reactions can occur away from home in school, on the bus, in restaurants or airlines, anxieties about this complex issue are heightened. For students in public schools, the issue may include questions about the need for 504 Plans and access to disability rights protected under a provision in the Rehabilitation Act of 1973.
In response, a local support group called Protect Allergic Kids (PAK) in Holbrook, NY, has grown quickly from a small group of parents sharing information and supporting each other into a respected 501(c)(3) nonprofit organization and charity in the State of New York. Co-founders, Cristina Stainkamp and Alisha Coupe, share stories of their families' food allergy experiences at regular support group meetings that take place at a local library or elementary school. PAK's advisory board first began with Daniel L. Mayer, M.D., of Adult and Pediatric Allergy, Asthma and Clinical Immunology and has recently expanded. In addition to Dr. Mayer, the board includes the president of the New York State Association of School Nurses (NYSASN), Rita Molloy, a legal advocate, Doreen Cordova, Esq., of Cordova & Associates, P.C., and a social worker, Patricia Bass, LCSW-R, of the Agency for Individual and Family Counseling.
With a dedicated volunteer support team and expert advisory board, PAK's support group helps members learn how to stay safe and better manage life with food allergies. The PAK team visits schools and public libraries to spread awareness of the need to take food allergies seriously and encourage policies that do the same. PAK and FASE also participate in an annual Long Island "FAAN Walk for Food Allergy," an event to fund research and find a cure scheduled next for October 2009.
As FAAN drives food allergy research, advocacy, education and awareness through its careful mission and outreach efforts, life is made easier for the food-allergic community. Likewise, recent changes in food labeling laws have made choosing what to eat more manageable. Most importantly, New York State adopted guidelines, "Making the Difference: Caring for Students with Life-Threatening Allergies," in June 2008 to help school boards and districts develop safe policies and practices in education.
To learn more, join Protect Allergic Kids and guest speaker Dr. Daniel Mayer on Monday, February 23rd at 7 pm at the Nokomis Elementary School (multi-purpose room) in Holbrook, NY for a special program on managing life with food allergies.
For further information: The Food Allergy & Anaphylaxis Network (FAAN) at www.foodallergy.org (800) 929-4040; Protect Allergic Kids (PAK) www.protectallergickids.org (631) 207-1681 Food Allergy Support and Education Group (FASE), www.karma411.com/fase; American Partnership for Eosinophilic Disorders (APFED) www.apfed.org; Campaign Urging Research for Eosinophilic Disease (CURED) www.curedfoundation.org; The Children's Hospital of Philadelphia (CHOP) www.chop.edu; The American Academy of Asthma, Allergy, and Immunology (AAAAI) www.aaaai.org; Allergy & Asthma Foundation of America (AAFA)
www.aafa.org; Daniel L. Mayer, M.D., Adult and Pediatric Allergy, Asthma and Clinical Immunology Smithtown, NY (631) 366-5252; New York State School Guidelines, "Caring for Students with Life-Threatening Food Allergies"