Hello Friends,
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.
Our Story:
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: 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!
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, thanks to Howard Valentine. Head of Research and Development at the American Peanut Council, 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. (See contract here.)
Later, CCH backed out of our contract stating, “Food allergy is not our priority.” They returned all donations then called those who donated asking if they would donate again, but this time for general hospital purposes. A friend, who happens to be a Federal Magistrate, took a look at the contract and said it was actually a fortunate thing that Cincinnati Children’s had changed their mind. If we would have raised one penny less than $2 million dollars, the way the contract was crafted, CCH could use the money for any purpose they see fit. Nevertheless, I have created a facebook support group for those in clinical studies. (Join OIT Trials here.)
“In the Meantime” Story:
During my calls to Duke, I kept asking how will I know what will happen during a reaction? I learned about component testing from an amazing researcher, Dr. Anath Thygarajan. 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. Dr. Thyagarajan put me in contact with the lab, and though they wanted to help, they did not know how to charge me. “We’ll worry about that later.”
After PIRL Lab performed 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. We need that information.
“Is he going to vomit or will he stop breathing?”
Thankfully, those tests have become available to the public and serve as a useful tool for diagnosis, management, and potential treatment. (Click here to read my favorite description of the component test.)
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, Dr. Scott Nash, 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 zero.”
In 2009, I wondered if there were millions of 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. Our groups could be the 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 find our 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, databases, and OIT “Spirit Team” products.
Currently, we have over 80 OIT allergists, nearly 30,000 members and WALLS OF GRADUATES! Thanks to one of our brilliant volunteer OIT mothers and our amazing admins, we have an 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.
Our MISSION:
- Preserve, protect and present the role of Private Practice allergists in the desensitization process
- Unite and support our favorite Private Practice OIT Allergists and facilitate physician-to-physician training
- Expand Private Practice OIT offices into more neighborhoods in the U.S. and throughout the world
- Share the news that OIT is SAFE, HIGHLY EFFECTIVE, and AVAILABLE now! (Find dozens of Peer Reviewed Publications at the OIT Center website.)
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.
We want you to be free to change your food allergy story and write your own happy ending!
Please share our message.
Help us help millions!
