Tuesday, June 25, 2013

Going "Home" to Visit Eosinophilic Family!

The first time that a physician mentioned eosinophilic esophagitis (EoE) in relation to my little overachievers, I was devastated!  All that I knew of the condition came from observing a friend whose toddler son had it.  This sweet child had only 3 or 4 foods that he could eat, and my friend's stress level was sky high.  She focused nearly all of her energy on keeping her son nourished enough to avoid surgical implantation of a feeding tube.  I saw her battles with the insurance company, and how she scrimped to pay for the formula that cost roughly the same amount as her monthly mortgage payment.  I was not able to observe the effect on her husband because he was always working in an attempt to pay down the medical bills.  This little boy was growing up and meeting milestones that could never be revisited, and his parents were fighting so hard just to survive.  I wanted no part of that world!

My first response was to commune with my keyboard.  In February 2008, a keyword search for eosinophilic esophagitis led me to the American Partnership For Eosinophilic Disorders (APFED) and a relatively small list of research studies.  APFED's website summarized what I was not able to understand of the research.  I was relieved to learn that most kids with EoE are not like my friend's son!  Roughly 3/4 of EoE patients can remove the most common allergens from their diet to get rid of the excess eosinophils and find relief from symptoms.  Those foods are milk, soy, eggs,wheat, nuts (peanuts & tree nuts) and seafood (fish & shellfish).  That's a very tough diet to maintain!  But as long as they don't eat those foods, those EoE patients are healthy.  My little overachievers, of course, fall into the 1/4 of patients that require further food elimination or the use of steroids to manage their condition.  Based on the large number of foods that we knew to be problematic, we went straight to elemental diet which is the removal of all foods.

I expect you're getting a good laugh at my expense about now, but that's okay!  I have come to accept that this is just the way that things tend to work with my bunch.  To give my friend credit, she did not laugh when I complained about how HARD it was to live this life and how LITTLE information there was to guide us!  Instead, she put me in touch with a group of families whose children all had EoE or a similar condition caused by too many eosinophils in other parts of the GI tract.  It is the support of those other families and APFED's educational resources that helped me understand and adjust to what I know refer to as the eos world.

In 2009, I was able to attend APFED's annual patient education conference.  There I met countless other families.  For some, the diagnosis was new and overwhelming.  Others seemed like veterans in the daily fight against the evil eosinophil.  One such father took the podium the first evening.  His son was being successfully treated with elemental diet and a gastronomy tube.  He told us how difficult it was to hand his son a bowl of crushed ice to eat for a snack when the son had first stopped eating all food.  There were silent nods of understanding.  After gaining his composure, the father had gone to sit with his son.  When he rounded the corner, he found all of his children sitting together on the couch, each child with a bowl of ice in unspoken support for their brother.  In that moment, the emotional impact of EoE hit me.  I choked on a sob and bolted to the ladies' room where I could cry with a smaller audience.  And there was an audience, as I was quickly joined by a few moms who had come to offer their own quiet support.  After a splash of water and a few deep breaths, I rushed back my seat...just in time for the father to give reassurance that life with EoE does get easier.  And I knew then that my boys would be okay.  Even if they could never eat full diets and they always needed periodic surgical procedures, they would be okay.  And so would I.

Over the next day and a half, I sat through presentations where physician researchers addressed the audience of patients and parents as equals.  They took the time to explain medical terminology as they introduced it, but they otherwise addressed us as equals.  There were break out sessions where we were able to interact with the speakers in small groups to gain more detailed knowledge in areas of special interest.

Since that first conference, I have attended APFED's patient education conference each summer.  The information that I learn exceeds what I can find on the internet.  I meet the people that are changing the world for our growing community of eos families.  I reunite with friends that I see just once each year.  APFED's president, Wendy Book, once said that going to the annual patient conference is like going home.  And I agree!  As I prepare to spend this weekend in Philadelphia, I don't feel like I am preparing for a medical conference.  I feel like I am going home to my eosinophilic family!

While I am in Philadelphia this weekend, I will be participating in APFED's Hope on the Horizon Walk.  All funds raised through this walk will be directed to research on eosinophil associated diseases.  With time, research and continued collaboration between centers, it is my hope that there will one day be a less invasive way to diagnose, treat and monitor EoE.

Please consider sponsoring me for the Hope on the Horizon Walk.  You can view APFED's solicitation disclosure here.  There are 3 ways you can contribute.

  1. Donate online through APFED's website with a credit card.
    Payment type = Hope Walk - Philly
    In Honor Of = Overachieving Bunch
  2. Mail a check or money order directly to APFED.  Rather than risk an entry error, I ask that you visit APFED's donation page for further details.
  3. Spread the word!
Three of my favorite overachievers walking for
APFED's Hope on the Horizon Research Fund.

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