May 13 – May 19 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…
Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.
This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EoE). EoE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.
EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EoE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EoE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him/her well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.
At present, even with the rapid increase in prevalence of EGIDs, there is little public funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.
http//:www.apfed.org/
If you would like to participate in National Eos Awareness Week here are some things you can do (However, if you feel that you can not do any of the following suggestions, just by making one more person aware of Eosinophilic Diseases you are helping our cause):
Wednesday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.Thurday, May 17: Wear hot pink and purple (the color of eosinohils on biopsy slides) and hand out dum dum suckers to your friends and coworkers. Many kids with Eos Disorders can not eat anything with food proteins. However, dum dums are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.
Friday, May 18:“Eat like Andrew for a Day Challenge”. Andrew began trialing food in October of 2010. He has tried a total of 16 foods. We know he has failed 11 and is now eating 5. He is not currently in remission. We have taken out the last food he was trialing. He will scoped on again on June 14 and we hope he will once again be in remission. The elemental formula is still his main source of nutrition. However, if you would like to try to eat like my Andrew for a day, his foods are sweet potato, lite canned peaches, pinto beans (the ingredients can only be pinto beans, salt and water—I have to make the dried beans), lamb and grapefruit. He can have salt and sugar, but no other seasonings or flavor. You may only drink water, nothing else. Be sure you read every word of every label, and there is no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances. Then, take a few moments to let Andrew know, either on here or a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” Challenge went for you.
Saturday, May 19: Please send letters to your congressmen reminding them that this is National Eos Awareness Week.
Ginny and Greg Barton
