May 26, 2018

In the food allergy world, there are heroes and there are superheroes. My friend, Georgina Cornago, is a super hero. She is one of the bravest, most beautiful warrior moms for the food allergy world. She courageously shared the story of her teenage son, Gio, on these pages a few years ago, “A Race to the Emergency Room and Why Labels Matter.” It has saved countless lives (you can read it again here), but we wanted to reach out to her to ask what she would recommend now, in light of recent deaths and the skyrocketing prices and recent shortage of EpiPens.

So we sat down for a Q&A. Her answers are below.

Q. We’ve shared Gio’s story many times since you were brave enough to first write about it. It has saved MANY lives. In October, it will have been 5 years since his death. You are a remarkable leader and example of strengths to other parents, particularly those who have lost their children. What advice would you give to parents of children with food allergies?

My advice to parents of children with food allergies would be to live life knowing that you have control over the diagnosis, not let the diagnosis control your life. Food allergies are manageable. Yes, they are challenging, they can infuse anxiety, endless label reading, long nights of last minute food prep for safe school snacks, safe school lunches, safe party planning etc., 504 meetings, doctor appointments, endless time spent on the internet researching the latest food allergy treatments, blogs, newest safe foods, recipes, support groups and on and on. It is hard work and you don’t have to do it alone. You can empower yourself and your child by educating yourselves and your caregiver circle on how to keep your loved one safe. Education is Key. Fear and anxiety stems from the unknown.

Make sure everyone knows signs and symptoms. Make sure everyone knows the importance of reading labels, how to read labels and that they need to read labels every single time, no matter how many times the same food has been eaten before. Most importantly ALWAYS have 2 or more epinephrine injectors everywhere you go. Make sure everyone who is a caregiver knows how AND WHEN to use it and have everyone practice using epinephrine injectors often. Last if you think a reaction is happening, if known or possible ingestion, Do NOT be afraid to use your epinephrine! I cannot ever repeat it enough! If not needed and used, it will not hurt. If needed and not used, well, no one wants to wait around to see what that outcome could be.

Remember this: Food allergies are serious and can be Life Threatening!

• Food allergy is a potentially serious immune response to eating specific foods or food additives. Eight types of food account for over 90% of allergic reactions in affected individuals: milk, eggs, peanuts, tree nuts, fish, shellfish, soy, and wheat (1,2). Reactions to these foods by an allergic person can range from a tingling sensation around the mouth and lips and hives to death, depending on the severity of the allergy. (Content source:
• CDC/National Center for Health Statistics)

Q. What advice would you give to parents who have lost their child to food allergies?

Ah I don’t know how I can give advice. What can you say really? Losing a child to food allergies is the same as losing a child for any other reason. It’s just not supposed to happen. I’m sorry it happened. I wish you didn’t have to join this horrible club no gets to choose to be a part of. I can only say do whatever it is you need to do to heal your heart. I know what helps me heal, and that is helping others so they will never have to know our pain. Let your children wrap their love around your heart, let the memories of them make you happy for they had such a beautiful life. Keep the love you get from loved ones all of it and hold it inwards for as long as you need to heal and then, when you can, if you can, open you heart and share your story, help become your child’s voice, let’s do what we can to help others together so that they too will know better.

Q. You have been fearless in your advocacy. It is beautiful and one of the things I love the most about you. Were you always fearless? What gave you courage?

Not sure I’d say exactly fearless. I just have always had to be a very independent self-sufficient person from a fairly young age. My life has had plenty of challenges let’s just say.

But fearless? What gave me courage? That is simple. Giovanni gave and gives me courage every day. The minute we stepped into that hospital, then spent 18 days fighting for him to live I no longer had a choice but to be brave, strong, to find courage. I needed every ounce of that which was within me to fight to keep him alive. Unfortunately, brave, strong, courageous, among so many other things, wasn’t enough to keep him with us. So now, Giovanni fills my spirit with courage and strength to forge on so I can be his voice and the voice of the millions who suffer, in hopes that one day there will be an end to this suffering somehow, an end to food allergies and an especially an end to food allergy deaths.

Q. You are currently working on legislation in NY for food allergy families. Can you tell us a bit about that?

I am working on two bills right now in NY. One being Gio’s Law. https://www.nysenate.gov/legislation/bills/2017/a8760 it will require members of all emergency service providers (police, fire & EMT) to be trained in the administration of emergency anaphylaxis treatment and to carry emergency anaphylaxis treatment in their vehicles; that treatment being epinephrine injectors.

The other bill https://www.nysenate.gov/legislation/bills/2017/a8761 relates to requiring food allergy signage around parks, playgrounds, and recreations centers.

I spent the day in Albany last week (5/16) with several other food allergy parents, during Food allergy awareness week to help advocate for these bills along with many other important food allergy bills, including Elijah’s Law, named after sweet Elijah Silvera, who was given his allergen, a grilled cheese sandwich while in Pre-K, from his teacher who knew he was allergic to dairy. The school did not follow guidelines which would have kept Elijah alive today and this bill will change the current guideline policies currently in place for Pre-K and daycare centers.

I found this day to be a very positive one, the feedback from legislators were pretty much the same throughout the day. First, almost all that I spoke to had or knew a loved with food allergies. They all asked why is there is such an increase? Next, they all responded with why isn’t epinephrine everywhere already? I answered with the same question! I feel as though we are making strides, being it baby steps, our voices are being heard. How could it not? When you get statistics that say:

• 220 million affected globally
• 17 million affected in the U.S.
• 1 in 12 children diagnosed in the U.S.
• over 50% of adults report developing at least one food allergy after the age of 18
• number of people with a peanut allergy quadrupled between 1997-2010

Reactions

• Every 2-3 minutes there is an ER visit from food induced anaphylaxis
• 40% of children with food allergies experience a life threatening reaction
• 265% increase in rates of hospitalizations related to food allergic reactions in ten-year period
• 377% increase in insurance claims with diagnoses of anaphylactic food reactions 2007-2016

http://endallergiestogether.com/research/food-allergy-statistics/