Tuesday, July 14, 2015

Things I Learned at APFED EOS Connection 2015 for Patients with EoE and EGID’s

English: Eosinophilic oesophagitis, histologic...
I was fortunate to be asked to speak at the APFED (American Partnership for Eosinophilic Disorders) conference in Indianapolis this year. This is a family conference – with activities for kids and teens as well as fantastic, informative sessions for adults. Here’s a recap of just a few of the interesting facts I learned:

5% of patients with EoE have a co-existing condition of another EGID (eosinophilic gastrointestinal disorder).

Like other atopic diseases, EoE tends to run in families (with males outnumbering females 3 to 1).

We have seen a dramatic increase in EoE, but it’s not clear whether this is a true increase or recognition of the disease. Until the mid-2000’s there were very few citations in medical papers/research.

There are considerably more EoE instances reported in urban areas than rural (and especially on the east coast). Could this be (at least partly) a result of both recognition and the fact that major centers for EoE are in these areas? (Which came first, the chicken or the egg?)

The epidemiology of non-EoE EGIDs is poorly understood. We now know a lot more about EoE than when my son was diagnosed 15 years ago, but there’s a long way to go!

EoE symptoms vary by age: The youngest may experience feeding disorders or vomiting (yeah, all that spitting up is NOT normal), whereas older patients are more likely to experience swallowing difficulties and food impaction.

The biggest culprit? Milk! (That is certainly true for my son.) Followed by egg, soy, wheat, and nuts.

As with food allergies, it seems that it’s relatively common for those with EoE to also have another allergic disease – especially asthma, and be very sensitive to air-borne allergens.

This all rings very true for me, confirming things I suspected. What about you?

5 comments:

Alisa said...

We definitely found the airborne allergen sensitivity to be very high with EoE (seasonal, food, etc.), but didn't fall in the stats - girl, west coast.

Lisa Havens said...

my son was diagnosed with eoe last year at age 11. He has had an allergen free diet since infancy with total avoidance of milk, egg, wheat, soy, chick pea, beef, and all nuts, and shellfish. He has asthma and was diagnosed with severe crohns disaese at age 7. The thing that struck me immediately upon researching eoe was that one of the first treatments is an allergen free diet. I thought, hmm, hes already been doing that his whole life. Which means the few foods he would and could eat must be causing a reaction along with perhaps airborne allergens. As it turns out he has the PPI-responsive subtype of eoe. good thing i got that expensive, out of state second opinion or wed still be making him swollow steroids which may not have even been effective. he now has a gtube and is doing so much better. still dont know what the future holds in terms of food challenges. But it is a relief to know that his food aversion was real, had a medical cause, and it was not a failure on my part- I just wish we knew about the eoe sooner it explains so much. Lisa in NY

Colette said...

Lisa, I am so happy to hear that you have a clear diagnosis. Sometimes, getting that answer is the hardest part! Best of luck!

Lisa Havens said...

thank you Colette! i am trying to find some kind of support group here in the rochester ny area. Because my son Milo has multiple severe food allergy, asthma, crohns and eoe i sometimes feel pretty alone with it all. i finally asked the NP if she knows of a good support group and she said they have a fledgling eoe clinic and they may be able to connect me with some other kids/families like Milo. he has had a lot of trouble after a promising start with the gtube feedings but we keep adjusting the rate and its getting better. I was thinking a support group for parents of chronically ill kids. There are times it feels so never ending, and though i was in a kind of denial for years this past year since the eoe diagnosis has been kind of an acceptance of reality year for me- like facing the fact that these illnesses are all chronic and he will have medical issues probably his whole life. that is what breaks my heart- i feel like he is such a bright light and i just hate the idea of him suffering and being limited in what he can do. Its hard to balance the need for know;edge and research with the need to live day to day. Just the "severe aggressive" form of crohns (his first GI doc's words) is pretty scary in terms of what he may face down the line.

Lisa Havens said...

thank you Colette!