National Eosinophil Awareness Week

16 May

Eosinophillic Disorders are rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Button Boy suffers from Eosinophillic Esophagitis, the most common of these rare diseases.  When he eats certain foods his body sends eosinophils to his esophagus where they attack and damage the tissue.  This disease causes sever chest and tummy pain, vomiting, gagging and the desire not to eat because of the irritation in his esophagus.

There is no cure for Eosinophilic disorders and no good treatment.  The current treatments are steroids and/or the elimination of high allergen foods.  Right now, Button Boy is on an inhaled steroid (which he swallows to coat the esophagus) and a partial elimination diet.  We have seen an improvement in his eating and return to Birmingham in June for another endoscope that will hopefully tell us that he can continue to eat wheat, and we can add back egg into his diet.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders.  Fortunately, Congressman Spencer Bachus has stepped forward and expressed his concern to the director of the NIH.  However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

What you can do for Eosinophil Awareness Week:

Sunday, May 15:  Tell 10 friends about Button Boy….send out emails….post on FaceBook.  Feel free to link to this post.

Monday, May 16:  (Button Boy’s 8th birthday!) Wear Hot Pink or Purple (the color of eosinophils in biopsy slides)

Tuesday, May 17:  Hand out Dum-Dums to friends and co-workers.  Many kids who have Eos disorders cannot eat anything with food proteins.  However, Dum-Dums suckers are allergen free candy!

Wednesday, May 18:  Send emails to your Congressmen reminding them that this is National Eosinophil Awareness Week.  Also, send a thank you to Congressman Spencer Bachus, thanking him for all that he has done in showing his support research funding.

Thursday, May 19:  Pray for Button Boy and other children & adults like him that are suffering with this disease.

Friday, May 20:  “Eat Like an Eos Kid for a Day Challenge”  We realize it is impossible for us to eat like many of the Eos kids have to eat, since a lot of them are on elemental diets (usually fed through a G-tube).  Therefore, we are asking you to give thanks for everything you put in your mouth this day.  think about every bite, every drink, and every medication.  Remember that everything you come in contact with could be a potential trigger and danger for Button Boy.

Button Boy with his NG tubeButton Boy at 6 months old in Children’s Hospital in Birmingham, AL.

Button Boy at 7 1/2 years old.  G-tube is gone, and he is on an elimination diet that excludes Egg, Nuts, Fish, and Cinnamon.  His next EGD is on June 21.

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