Monday, March 22, 2010

Progress in EE Research – There is Hope

One of the lesser-known causes of food allergies is eosinophilic esophagitis (EE), the most prevalent of the eosinophilc gastro-intestinal disorders (EGID).

My son was diagnosed with EE nine years ago when there was little to no information available on the disease. It’s an allergic reaction to the proteins in certain foods that triggers his EE. And when he has a reaction his esophagus becomes inflamed. I think of it like a rash inside his esophagus, similar to skin that gets inflamed with dermatitis. His esophagus closes up causing him to vomit, and his throat closes up so he can no longer swallow. Okay, enough description. The only solution is to completely avoid the foods he is allergic to.

But there’s good news:

The Children’s Hospital of Philadelphia and the Cincinnati Children’s Hospital teamed together on a research project and have recently reported some very positive news; they have identified a gene that they believe is linked to EE.

Breakthroughs like this one give me and other EE families hope. It’s organizations like the American Partnership for Eosinophilic Disorders (APFED) that help fund this research. And it’s appropriate that APFED’s current campaign for funds is called HOPE on the Horizon. Donations to HOPE on the Horizon are applied 100% to eosinophil related research. APFED’s goal is to double the HOPE Research Fund in 2010.

Are there others out there suffering from EE? Share your stories here.


Anonymous said...

Hi, my daughter suffers from severe EE and is currently on the elemental diet, fed via her peg (feeding tube). All foods seemed to irritate her esophagus. This diet has cured the EE, and with the help of a drug named Ciclasporin, my daughter seems to have a new lease of life...

Colette said...

Anonymous, thanks for sharing your story. Tube feeding is so difficult. I am lucky that we were able to isolate my son's allergies and avoid the foods that trigger him. Hopefully you will be able to as well in the future.

K.E.'s EOS fight said...

Thanks for starting this
My son is on a ng tube
and getting a g tube in 26 days at CHOP
I advocate for APFED daily
You can friend me on facebook

Colette said...

Colleen, I'm glad you find me! I'd love to friend you on fb but unable to find you. I am colette.martin on fb. Feel free to friend me!

Anonymous said...

I was just diagnosed with EE about a month ago, after a sudden 3 month bout of stomach and chest pain. I'm in my mid-30s and female--not your typical EE patient, I'm told. I've enjoyed reading your posts, as I'm currently waiting for the results of my RAST blood test and I'm going to get my patch test put on this afternoon.

I have a new appreciation for my health insurance and the care that I have access to here in NYC, and I can imagine that it's very difficult (emotionally and logistically) to help a child through this. I'm learning that it's a very individual disorder and we each have to find our own way to manage it, while supporting each other and sharing our stories.

Colette said...

Anonymous, I'm glad you found me! The good news for you is that now you know what is causing the problem. I'll keep my fingers crossed for you -- hoping that your list of foods to avoid is short. Most likely it will be certain proteins you have to avoid -- but you will feel soooo much better.