My name is Liseetsa Mann. In 2009, my son was diagnosed with anaphylaxis to peanuts. He was 4 years old. Fortunately, we had an informed allergist.
At the time, Duke University was conducting a clinical trial to desensitize children from their life-threatening food allergies. The treatment, Oral-Immunotherapy (OIT), is the process of administering increasing amounts of a food allergen, over time, to build a tolerance.
Our challenge was that we lived in Ohio and there was a 300 patient waiting list to get into that study. Even if we sold our house and moved to North Carolina, it would take years for our turn. By then, the study would be over. My son has a 2 minute window to full blown anaphylaxis. I needed to make an appointment! What could I do?
I started emailing researchers at Duke asking them to leave the study and start their own private practices to treat the children left out or removed from the trials. At the same time, Dr. Burks offered to expand his study to Cincinnati Children’s Hospital. They required $2 million dollars to host the study, so I became a fundraiser. Later, CCH backed out of our contract stating food allergy was not their priority. They returned all donations.
“In the Meantime” Story:
During my calls to Duke, I learned about component testing. Component testing pinpoints the exact proteins in a food to which the body reacts. Is this a “true” food allergy? Up to that point, component testing had been reserved for hospital or university programs. After PIRL Lab agreed to perform the test for my son, I urged them to make the component tests available to the public so parents could have a more accurate view of our children’s medical condition instead of relying on an IgE level that does not determine the actual severity of an allergic reaction. “Is he going to vomit or will he stop breathing?” We need that information. Thankfully, those tests have become available to the public now and serve as a useful tool for diagnosis and potential treatment.
According to FARE:
“Researchers estimate that up to 17 million Americans have food allergies. This potentially deadly disease affects 1 in every 12 children (under 18 years of age) in the U.S. That’s roughly 2 in every classroom.”
“The economic cost of children’s food allergies is nearly $25 billion per year.”
“According to a study released in 2013 by the Centers for Disease Control and Prevention, food allergies among children increased approximately 50% between 1997 and 2011.”
How does a food allergy diagnosis alter a family?
Once diagnosed, you will quickly be subjected to the medical and economic business of food allergy. If your plans include attending a brick-and-mortar school, you will soon encounter the social, political and federal aspects of “managing” a life threatening food allergy. You will be immersed in planning and shocked by people who may not care about keeping your child safe.
Your family will probably experience exclusion and isolation no matter how you try to make life seem “normal.” Your activities will revolve around “managing” a life threatening food allergy. For some, personal relationships suffer and can be marked with awkwardness from constantly trying to explain and defend their child’s health.
You will always need epipens, wipes and a charged cell phone in case of an emergency.
And while you “pray for a cure” and walk endless miles raising money for organizations that constantly tell you to “avoid” and “manage” and “wait,” we are here to tell you there is another way.
There is an actual treatment.
Your wait is over.
This modest and natural treatment is found in your neighborhood grocery store. Yes, the actual food that could potentially end a life, can save a life.
Oral Immunotherapy (OIT) has a near perfect success rate. To date, OIT is the only food allergy treatment “proven safe and effective.” Quoting Dr. Wesley Burks from 2009, “There is a molecular change in the blood and the allergy goes away.” OIT is not without risk and must be administered by a board-certified allergist.
In my son’s case, our OIT allergist, formerly of the Duke OIT Study, left his research position and opened his own private practice. As a skilled researcher, pediatrician and allergist, he successfully treated my son for anaphylaxis by starting at approximately 1/1000ths of a peanut and over the course of a year, increased his dose to the equivalent of 8 peanuts a day.
There were no drugs, no magic spells, simply “doctoring” at its absolute finest.
My child has not had one allergic reaction to peanuts since he started OIT in 2010. We watched his IgE level drop from over 100 down to 4.56. And while still testing positive to peanuts, “the likelihood that he will ever have another life-threatening food allergy reaction is basically none.”
Six years ago, I wondered if there were 15 million allergic people in this country, why couldn’t I find one person to talk to about OIT– except allergists? And with no end in sight to our food allergy epidemic, I knew more people would be coming. We could be that lighthouse in the storm for those seeking a safe place to learn and talk about OIT.
I could help them make an appointment!
“Where your talents and the world’s needs cross, there lies your vocation.” – Aristotle
In these 6 years, we have unapologetically maintained an online presence using our OIT facebook support groups to help other families in food allergy crisis unite with the ever-growing number of specialized allergists throughout the world. We have introduced allergist to allergist and facilitated OIT mentorships. We have created blogs, websites, apps, and databases.
Currently, we have approximately 70 OIT allergists, 25,000 members and walls of graduates! Thanks to one of our brilliant OIT mother-admins and our amazing helpers, we also have a new informative and interactive website, www.OIT101.org — to match our educational facebook support group, OIT101. Though we are working expeditiously, we have barely scratched the surface.
Unite and support our favorite Private Practice OIT Allergists. Help interested allergists receive training. And expand Private Practice OIT offices into more neighborhoods
Make it known to millions of food allergic people that OIT is safe, effective and AVAILABLE now!
Your gift will help us form a nonprofit organization so we can keep funding our OIT breakthroughs in patient care, physician training, infrastructure and technology.
Our true miracle is not a drug, a standardized protocol, or product. It’s the allergist.
Allergists who provide OIT say it is the most rewarding thing they’ve done in their careers. Thousands of children and adults are now free to live their lives entirely as they choose–not dictated by food or drink or researchers who will never be “ready for prime time ” without selling you a lifetime prescription of allergy products that may not even work.
We are IN it to get OUT of it.
And we want you to be free to change your food allergy story too and write your own happy ending!
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