US House Resolution 296

Some of you may know that Asher was diagnosed with Eosinophilic Gastroenteritis (more information about this disease is at www.apfed.org). This week, patients and their families are contacting our US representatives to try and get a bill passed (House Resolution 296) that will create a National Eosinophil Awareness week in May, which is the first step in increasing education and getting funding for eosinophilic diseases. This is the letter I sent to my congressman. If you feel so inclined, we'd love for others to call, email or write their representatives for support for this bill.

Dear Congressman Shadegg:

As the wife of a small business employee and the mother of a chronically-ill child, I was glad to see your work on making health care more affordable and easily accessible to small businesses and individuals last year.

Because of your background in health care reform and your position on the Health subcommittee, I am writing to urge you to co-sponsor House Resolution 296: Supporting the goals and ideals of National Eosinophil Awareness Week, and for other purposes, which is currently sponsored by John B. Larson of Connecticut.

Not much is known about eosinophilic diseases, and I am hoping that having a National Eosinophil Awareness week will help educate and raise awareness about these diseases. Currently, 50,000 people in the United States have been diagnosed with an eosinophilic disease. Our two-year old son, Asher is one of them. He was diagnosed with Eosinophilic Gastroenteritis at the end of May 2006. This disease means that he has allergic reactions to certain foods that cause a flood of allergic cells, called eosinophils, to attack his entire digestive system.

We consider ourselves lucky. Asher was diagnosed relatively quickly, can eat a fairly varied diet, and we can afford to pay for his amino acid formula that our health insurance is currently refusing to cover. However, some families go for years with children that are chronically ill and underweight. Some diagnosed families struggle to pay for formula that can cost about $800 a month.

This is why I’m hoping that you will co-sponsor this resolution. Thousands of eosinophilic families deal with expensive amino acid formulas, restricted diets (or they cannot eat anything because of their disease), and uninformed healthcare providers. By passing this resolution, we’ll be able to raise awareness so that people who have not been diagnosed can be to get the care that they need, and we can work towards finding a cure for this disease.

As a mother who researches and studies every day to find ways to make life easier for my son, I am committed to helping him and other families that suffer from this affliction. I would be happy to help you with this important work in any way that I can.

Best Wishes,

Emily Clyde Curtis
Phoenix, Arizona