Six Take-Aways from #EOS11 (Or, Maybe Good Enough is Good Enough)

What a full day. After hearing about EGIDs almost non-stop from 8 to 4:30 at the 2011 APFED EOS Connection Patient Conference, my head is kind of spinning. Here are a few take-aways for me.

1. Kids are where all the action is. I’m finding it tough to wade through the explosion of discoveries and literature about pediatric patients and studies in order to uncover what’s relevant to me. One attendee raised the question about what will happen as this pediatric population ages. Perhaps we will see growth in the literature about adult EGIDs as a result, though I’m certainly hoping for their sakes that they all grow out of their diseases before then.

2. Eosinophilic esophagitis is also where all the action is. Seriously. It’s by far the most common of the EGIDs. Further, by virtue of the relative accessibility of the esophagus, it’s much easier to ascertain and monitor what’s going on there. Everything else gets short shrift, more or less. And that’s unfortunate for me because…

3. Eosinophilic esophagits seems to be its own disease. That’s the opinion of Chris Liacouris of Children’s Hospital of Philadelphia. He stated several times that isolated EoE seems to have different characteristics and respond differently to treatment than eosinophilic gastritis, which can also have esophageal involvement. While EoE acts largely like an allergic disease (and responds well to dietary therapy), EG seems to be much more of an immune pathology and is harder to pin down and treat. I now find myself thinking of my case less as EoE+EG, and more as EG with esophageal eosinophilia. In the end, maybe that doesn’t change much, but it is a different mindset, and may also explain why the stomach stuff seems so much more persistent for me.

Still, despite the bummer of probably being stuck with EG, one of the panelists mentioned…

4. Some promising research that surfaced at the Digestive Diseases Week GI Conference: One, a study showing excellent adult responsiveness to elemental diet; the second, successful maintenance of adult patients on elimination diets. I think those might have been studies of isolated EoE. In any case, questions for Dr. Eos, though, on the other hand…

5. Allergy testing is really wonky. Nothing, it seems, is really all that good, though a combination of skin prick testing (which I have done) and patch testing (which I have not) tends to be more successful at picking up more potential allergens, some of which my work through different allergic mechanisms. So, another thing to look into, should I ever find myself ready to take this on.

6. I don’t think I’m ever expecting this all to get any better than “good enough.” That sounds really discouraging in writing, but it’s kind of liberating not to be on a search for “perfect,” or “symptom free” or “histologically normal.” I think I can live with good enough.

About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Allergies, Case of EosGirl, Education, Reflections and tagged , , , , , , . Bookmark the permalink.

2 Responses to Six Take-Aways from #EOS11 (Or, Maybe Good Enough is Good Enough)

  1. Was this your first time to the conference? My husband and both of our boys have EoE. I read a lot on the topic trying to keep up to date. Did you find it beneficial? I was going to try and go this year but it didn’t happen. My sister-in-laws little girl was just diagnosed as well and we talked about going together next year. What are your thoughts? Worth it or not?

  2. eosgirl says:

    Hi, AllergyLife! Thanks for this comment and the others you just left. Sounds like you have your hands full. Yes, I can say that the conference was worth it. Many of the sessions, activities, and support seemed geared toward parents with EoE children (and toward the kids, too). So, given your situation, I’d think it would be especially helpful if you ever got to one! I’m not sure I’d make the effort to go every year, but I’m definitely glad I went this year. Good luck with your journey. If you’re starting to self-educate, you might want to consider joining APFED. Lots of good information on their site, and excellent community on their boards.

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