If food made you double over in pain, and the existing medications didn’t work, would you really follow doctor’s orders and give up ALL food? Would you just accept this as the best that doctors can do? I don’t! Forget that. Life could be better. I believe in the researchers. In just a few years, the progress has been amazing. Swallowed steroids, often in conjunction with eliminating some foods, are now helping the majority of children with eosinophilic esophagitis regain a more normal, pain-free life. Other kids can find relief by following a severely restricted diet that would frustrate most of us.
Then there are the kids like mine. My oldest hasn't been able to tolerate the medicine, and every food we try to introduce creates horrible symptoms. All four kids drink an expensive formula that is so disgusting that the smell would gag you. Some opt for a feeding tube because they simply can’t tolerate the taste. And even though we comply with this difficult treatment plan, my oldest child STILL has bouts of pain that the doctors can’t explain. It stinks.
EGID diagnoses are on the rise in children and adults. These disorders, unlike many other illnesses that affect even fewer people, receive few NIH funds. There are many unanswered questions and eager researchers ready to tackle them, but it all takes money.
CURED Foundation turns every penny over to researchers. A recent study funded in part by CURED donations found that the prevalence of this disease is a stunning 1 in 1,000. This is shocking considering that in 2007, we were told it was 1 in 10,000. The study looked at biopsies from 1982-1999 and found that the disease did exist then – it is not new, just newly discovered. After tracking these people down, the researchers found that most still had the disease and struggled with symptoms. When I’m asked: “Will they outgrow it?” The answer now is clearly NO. This is a chronic, lifelong condition, and if it’s not treated, our kids risk greater harm to their esophagus that could hurt their ability to swallow. Depressing, but this information is so important because it helps patients and doctors understand the severity of the disease.
Another research study funded by CURED discovered a gene that plays a role in this disease. This is a major finding because new treatments could be developed to target the gene. Although our family clearly shows that genetics matter, most families have just one child affected. The doctors hypothesize that it’s a combination of genetics and environmental factors at play. What causes this disease to be active? Why do some kids get it and not others? Why does the severity of the disease and the responsiveness to medications and diets differ among patients? Leg pain is a frequent complaint, but how does it relate to disease activity? Are there safer alternatives for diagnosing and monitoring this disease than invasive endoscopies that carry risks? And why is this disease, like regular food allergies, on the rise? We crave answers.
Among the eosinophilic disorders, eosinophilic esophagitis affects the most people and attracts most of the research attention. But this needs to change, too. Those who suffer from other eosinophilic disorders, such as eosinophilic gastroenteritis or eosinophilic colitis, can have an even tougher time finding relief.
While I ultimately want a cure, I’m happy with any research progress that yields answers. Consider joining our fundraising efforts. Your help is very much appreciated!!!
