Celebrating Top Members-Project Vote-Getters: Spotlight on Eosinophilic Esophagitis

[I've written here about six projects proposed for the American Express Members Project that were in the top 25 by number of votes, but were not selected by the advisory board. To celebrate the efforts of parents who got that vote out, and spotlight some worthwhile charities, I'll be profiling these bypassed projects over the next six weekdays. Though they're no longer in the contest, I hope you'll consider voting with your pocketbook and making a donation.]

Project Name: EE - Save Sick Children

Popular Vote: The project was #2 in number of votes when the American Express Members Project Top 25 were chosen, with 6,720.

Disability Addressed: Eosinophilic Esophagitis. According to Daniel More, MD, About.com guide to Allergies, "Eosinophilic esophagitis (EE) is a disease characterized by swelling of the esophagus (the part of the body connecting the throat and the stomach) caused by an allergic white blood cell, the eosinophil. Symptoms of EE can range from severe heartburn, difficulty swallowing, food impaction in the esophagus, nausea, vomiting and weight loss." To hear about the effects from children with the disease and their parents, view the video "Life Without Food."

Achievable Goals: I asked Wendy Book, MD, vice president of the American Partnership for Eosinophilic Disorders (APFED), what might have been done with the amounts of money the American Express Members Project is awarding this year, which range from $100,000 to $1.5 million. Her response:

"Those living with Eosinophilic Gastrointestinal Disorders (EGIDs, of which EE is a subtype) face many challenges. The first is delays in diagnosis averaging two years or more. During that time, the child or adult undergoes many tests, medication trials, and misdiagnoses before the correct diagnosis is found. In the most extreme cases (and thankfully very rare), parents may be accused of neglect because their child is malnourished. The time to diagnosis can be decreased with education of front-line healthcare providers and subspecialists likely to encounter patients with EGIDs. A healthcare provider education campaign is achievable for $500,000 or less, and the impact of the intervention is measurable.

"Direct support of research is possible even with relatively small sums of money. For instance, APFED offers a $25,000 research grant to junior faculty (doctor-scientists who have recently completed their training). The researcher can generate preliminary data that is used to apply for larger grants. An increase in the size and number of grants could be facilitated by any sum of money, thus bringing more researchers together (and hence more brilliant minds) to achieve our mutual goals."

Current Research: Book shared some of the current work being done to help children with EE and their families. "There is research going on at a number of centers around the globe currently. For instance, The International Gastrointestinal Eosinophil Researchers (TIGERS) represent a consortium of world experts at key medical centers focusing on the role of eosinophils in gastrointestinal diseases. TIGERS is a partnership of The International Gastrointestinal Eosinophil Research Symposium (TIGERS) and The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) working together to advance EGID research.

"Currently, the only way to diagnosis and follow EE is by biopsy of the gastrointestinal tract. My eight-year-old son has had fourteen endoscopies under general anesthesia, and that is not unusual for kids with EE. Researchers are trying to find a better way to diagnosis and manage EE without the invasive tests and biopsies. In regards to treatment, there are clinical trials going on at medical centers evaluating a new experimental intravenous treatment for EE that works by blocking interleukin-5. If the trials are successful, this would be a new treatment option, not a cure. Ongoing research trials are listed on the clinical trials page of the APFED website."

Potential Impact: According to Book, "We really do not have accurate numbers for EGIDs and this is a very important question to answer. Right now, there are estimated to be more than 100,000 children and adults with EE. But the actual number could be higher or lower. EE seems to be on the rise not just in the US, but many other countries as well. EGIDs overlap with a number of other diseases groups, such as food allergies, other eosinophil-associated diseases, and other immunologic-based diseases. Research conducted on EGIDs may apply to other disease groups as well."

Personal Appeal: Sarah Wisely, a 15-year-old with EE, writes, "Around 3 a.m. my day begins by waking with diarrhea and vomiting. After a couple of hours rushing to the bathroom sweaty and nauseated, it is time to get ready for school. I suffer multiple symptoms including difficulty swallowing, nausea and vomiting, failure to thrive, abdominal and chest pain and many more. EE is not curable, at least not yet, and I can only manage the symptoms by getting an amino acid formula through a feeding tube that was surgically placed into my stomach. I often dream about being able to do the things that normal kids my age do. But the thing I want most of all is to have the opportunity to go through the day not feeling sick. I really do not know what it is like to get a good night's sleep, wake up without feeling nauseous, and get through a day without throwing up and having diarrhea. Advances in Eosinophilic Disease would hopefully make this a reality."

How to Help: APFED, a nonprofit patient advocacy organization established in 2001 by three parents of children with EGIDs, accepts donations through its website at www.apfed.org.

"The American Partnership for Eosinophilic Disorders is dedicated to advancing the understanding of eosinophil associated diseases, supporting development of new therapies, improving the time to diagnosis, patient and physician education, and expanding public awareness," Book explains. "APFED holds a seat on the American Academy of Allergy, Asthma and Immunology Lay Organizations Committee, the American College of Allergy, Asthma and Immunology Lay Organizations Committee, and the AAAAI Eosinophilic Gastrointestinal Disorders Task Force. We are an invited member of National Institute of Health’s (NIH) Food Allergy Clinical Guideline Coordinating Committee. APFED is highly respected in the medical community, and has a long history of supporting education of patients, families, the public and professionals. We can facilitate projects to improve the understanding of eosinophilic diseases, decrease delays in diagnosis, understand the disease at the community level, educate healthcare providers, and improve outcomes for all affected. APFED plans to continue to work towards this goal in conjunction with medical societies, governmental agencies and physician research groups across the globe."

For other donation options, Book suggests that "individual academic researchers are always in need of support for their work. Most universities will accept donations directly for specific researchers. For donations to TIGERS, the website is www.tiger-egid.cdhnf.org."