Welcome to Allergy Advocacy

Welcome to the Allergy Advocacy Association website.  We are here to help better serve any individuals concerned with issues relating to allergies and anaphylaxis.

EAI Injectors Still in Short Supply

EpiPen World Wide Production Line cartoon

The numbers are in and they aren't looking good for epinephrine auto-injector (EAI) availability.

As the EAI shortage passes the 18-month mark, many news outlets have covered the topic and moved on. At the Allergy Advocacy Association, however, we think we should be doing just the opposite....  Read the article here.

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Allergies come in all shapes and sizes ...

Just like allergy sufferers. And they are on the rise. For many people allergies can range from sniffling and sneezing to skin rashes to gastrointestinal issues. A certain percentage, however, have more than these uncomfortable symptoms to deal with. Anaphylaxis, a serious life-threatening reaction, causes approximately 1,500 deaths a year in the United States alone. Clearly, allergies are nothing to sneeze at!

Articles for Advocacy

Educating the general public about preventing anaphylaxis is one of the main goals of the Allergy Advocacy Association. We are actively recruiting volunteers from the medical field to assist us in providing training to day care center teachers, recreation center staff, scouting organizations and school of nursing students, and are very appreciative of the volunteers we have thus far. This month we are spotlighting two of our volunteers who have had close calls with anaphylaxis themselves, so we hope this will inspire others to join us!

Epi Near You New York Volunteers Spread the Word on Anaphylaxis

Damien Rzepka with daughter
Damien Rzepka with daughter
Sandy Glantz
Sandy Glantz

By Suzanne Driscoll
May 7th, 2019

Your Allergy Advocacy Association is fortunate to have so many great volunteers for our Epi Near You New York anaphylaxis emergency training program. Many of them are from the healthcare field who donate their time and talents to training a variety of audiences in the Rochester area. They educate teachers at daycare centers, nursing students, and counselors at summer camps and recreation centers on the dangers of anaphylaxis and how to administer epinephrine. This month we would like to spotlight two of our volunteers, Damien Rzepka and Sandra Glantz. If you are interested in becoming one of our ENYNY trainers, please give Jon Terry a call at 585-319-6848.

Read the article here.

 

Just as our excitement was building for peanut oral immunotherapy (OIT), a recent study cautions that there may be more harm than good, with an increase of severe allergic reaction three times greater than if a person simply continued to practice avoidance. Some parents of children who have had success with OIT strongly disagree with these findings, and hope the FDA continues with its approval process. They say any reactions are happening more in a controlled environment at home rather than in a public place such as a restaurant in an emergency situation.

Study Favoring Avoidance Over Food Allergy OIT Ignites Controversy

Dr. Derek Chu
Dr. Derek Chu photo: McMaster U.

By: Gwen Smith
April 28, 2019

A systematic review of peanut oral immunotherapy that compared 12 controlled studies has brought a longstanding “pro or con” debate over whether OIT is ready for widespread use spilling out into the news media.

The analysis, published April 25 in The Lancet, has generated discussion, “more harm than good?” headlines as well as controversy in the food allergy community. It lands at a time when an increasing number of allergists’ offices are starting to offer the therapy, growing numbers of food allergy families are expressing interest in treatment – and just as the FDA is about to consider approval for a standardized peanut allergy OIT biologic drug.

The review, led by Canadian allergist Dr. Derek Chu, concluded that undergoing peanut OIT results in a risk of severe allergic reaction three times greater than if a person with peanut allergy simply continued to practice avoidance of the legume. The frequency of anaphylaxis rose from 7.1% among those who were on placebo or avoidance in the dozen studies to 22.2% for those on peanut treatment.

Read the article here.

 

There is a big difference between a food “intolerance” and a food allergy, and overuse of the word allergy can cause many to not take the threat seriously. Here’s a story of one teenager who had to stand up in front of her entire middle school and explain the dangers of her peanut allergy. She has learned to advocate for her own safety, and encourages all skeptics to take people living with severe allergies very seriously. Even today there are those in the medical community and the media who believe that the fear around allergies is alarmist and can be driven by profit-seeking and other motives. They should “walk in another man’s moccasins” for a day and then see what it is like to live with a life-threatening allergy.

Food Allergy Sufferers often Served a Side of Skepticism Alongside their Struggle

Fresh veggies, meats, crackers and dip

By Lavanya Ramanathan The Washington Post
Apr 23, 2019

Patricia “Trece” Hopp rose and took a deep breath at the start of middle school with something to say. She’d need her classmates’ understanding, she nervously explained, and perhaps their help.

Being near a peanut-butter sandwich might pock her skin with hives. A whiff of dust from nuts could hinder her breathing. Touching a peanut could send her into anaphylactic shock. And if she ate one, she could die.

Thereafter, “I was the girl with the peanut allergy,” says Trece, now 17. “It’s my identity. It’s part of me.” A part she has to not only remind people about but also repeatedly explain.

Read the article here.

 

Upcoming Events

May 16, 2019 - FOOD ALLERGIES COPING TEACHING SUPPORTING (FACTS) MEETING

May 16, 2019 — Food Allergies Coping Teaching Support (FACTS) Meeting
Fairport United Methodist Church
31 West Church Street,
Fairport, NY 14450
Saturday, March 16th, 10 am – noon
Contact: Joy Leinenbach, co-founder (This email address is being protected from spambots. You need JavaScript enabled to view it.), 585-748-5961

Presentation: Dr. Shahzad Mustafa
A discussion of the most recent advances in food allergy. FDA-approved therapies for peanut allergy (the peanut patch and peanut OIT), other advances in food allergy and anaphylaxis, and local ongoing clinical research studies.
If you are interested in attending, please RSVP to: This email address is being protected from spambots. You need JavaScript enabled to view it.

May 15, 2019 - ALBANY NY, FOOD ALLERGY AWARENESS DAY

May 15, 2019 - Food Allergy Awareness Day
Food Allergy Awareness Day
Legislative Office Building
NYS Capitol Albany, NY
Wednesday, May 15, 2019 9am-2pm
Exhibit Location: Glass doors at the LOB entrance
on the Concourse level

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