Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.
In honor of National Eosinophil Awareness Week, I thought I would take the opportunity to highlight thisvery compelling video about two courageous boys living with eosinophilic esophagitis (EE). You can also read about their story on Neocate.com. We would like to thank Carson and Jake's Mom Chanda for allowing us to share her family's story and for all the hard work she has done to create awareness for EE. Watch YouTube video - Sarah
Eosinophilic disorders are on the rise in the US. Some clinicians have even referred to it as a “mini-epidemic”. One study I recently read suggested that it might not be a true rise in the number of people with eosinophilic disorders, but a rise in the recognition of the disorders as more and more doctors are able to identify and treat them. This is a very positive thing! But there are still people who do not know what eosinophilic disorders are. In order to help raise awareness of them, the week of May 16 – May 21, 2010 is designated as National Eosinophilic Awareness Week (NEAW).
The theme for this year’s Eosinophilic Awareness Week is APFED (in this case, it does not stand for American Partnership for Eosinophilic Disorders, but it is a clever theme!)
Monday, May 17th ------------------ A: Awareness
Tuesday, May 18th ------------------ P: Participate
Wednesday, May 19th -------------- F: Fun with Family and Friends
Thursday, May 20th ---------------- E: Educate Everyone
Friday, May 21st --------------------- D: Donate Dollars
Each day of that week is dedicated to a way to raise awareness. Whether you are raising Awareness by sending out a mass email to all of your friends and family or if you are Participating in a Virtual Walk, the goal is to be involved and get the word out!
One great and influential idea would be to make a video about eosinophilic disorders and post it on Facebook or YouTube. I saw one recently that really illustrated the true pain and suffering that children with eosinophilic esophagitis (EoE) go through on a daily basis (not to mention how they deal with the restricted diet they are on). That video truly opened my eyes to the life of a person with EoE. Click here to view it.
So get the word out in any way you can! What are some ideas that worked for you to raise awareness of eosinophilic disorders?
-Christine
We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. In case you missed it, be sure to read her other entries about her sons Paulie and Norman.
In a typical conversation about my children's food allergies and eosinophilic esophagitis, I stress that they are just like their peers. They may not be able to eat or (in Paulie's case) even be near certain foods, but they can still do everything else that a typical child can do! They love going to preschool and playing with their friends. Paulie tells elaborate stories, and he sings or hums all day long. Norman makes spectacular sound effects, especially those related to cars and other motorized vehicles. They run around like wild animals and make me wonder where they get the energy! However, this is not a typical conversation and my boys could not safely engage in many typical childhood experiences without my pre-planning and behind the scenes work.
Every aspect of life is affected by the boys' food allergies, and that is the case for every member of our family. We no longer attend the large holiday gatherings that we once loved. The stress of knowing that similar events have led to the worst of Paulie's allergic reactions overshadows the joy of the celebration. Instead, we gather in smaller groups or remain at home to celebrate alone, scheduling family visits for quieter times. I look back at the Thanksgiving dinners, Christmas parties and Easter brunches of my own childhood and I hurt for my children, knowing what they are missing!
Planning for school is an ongoing challenge. Paulie and Norman both have extensive 504 plans on file with the school that lay out the accommodations that are needed. I work with the teachers and staff every step of the way to ensure that the boys are not inadvertently exposed to allergens while at school. Every item used in their classroom must be inspected and approved. This includes soap and cleaning supplies. Teachers know that they cannot use food or food packaging in lessons and crafts. However, allergens can be found almostanywhere. For example, paints may contain egg protein and shaving cream (used for tactile lessons) may contain milk. It is my job to communicate with school staff to catch potential exposures before they occur.
Medical appointments are also complicated. It is important that doctors and nurses wash their hands immediately before examining the boys, but not until I have checked the ingredients of the soap. Every new or refilled prescription is a potential problem due to the frequent inclusion of allergens as inactive ingredients.
It is a fine line that I walk with family and friends to prevent allergic reactions while also allowing my children typical life experiences. Every person who takes the time to learn about food allergies and eosinophilic esophagitis is one more person to help us walk that line. As Food Allergy Awareness Week (May 9 - 15) and National Eosinophil Awareness Week (May 16 - 21) approach, please take the time to share your story or mine. Let's work together to raise awareness about food allergies and eosinophilic esophagitis!
- Kendra Tiedemann
The 3rd annual National Eosinophil Awareness Week is right around the corner -- May 17 through May 23, 2009. This week was created to help raise awareness for all eosinophilic disorders, including eosinophilic esophagitis (EE). EE is a rare inflammatory, gastrointestinal condition where the wall of the esophagus fills with eosinophils.
The number of people that are getting diagnosed with EE is rising but the condition is still relatively unknown. EE is often caused by food allergies and children with this condition are usually on a severely restricted diet. Because of this, many of them use an amino acid-based formula like Neocate as their source of nutrition.
For more information about EE, check out our EE 101 entry.
Since this rare disease often goes undiagnosed for months, National Eosinophil Awareness Week is a great time to help raise awareness about these conditions. To find out what events are going on during the awareness week, click here.
And to see what another family is doing to raise awareness about EE, check out this blog entry about Tami and her son Justin of Richmond, Virginia.
What are you doing for Eosinophil Awareness Week?
- Christine
For those of you who are not familiar with EE, children that suffer from the condition follow severely restricted diets and rely on amino acid-based formulas such as Neocate for their nutritional needs.
Common symptoms include:
Nausea; Vomiting;
Severe heartburn;
Difficulty swallowing; and
Weight loss.
If you are interested in getting more information About.com has a great article you can read.
As Allergy and Asthma month goes on throughout May, continue to use it as another way to get the word out about food allergies, and next week, focus on EE.
-Marybeth