What's New Archived Stories
Read archived stories previously featured on What's New in the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children's Hospital Medical Center:
Families Meet in Cincinnati for Conference on Eosinophilic Disorders
The third patient education conference on eosinophilic disorders was held in Cincinnati July 15-17, 2005. Eosinophilic disorders are caused when the body produces too many eosinophils (a type of white blood cell), which results in chronic inflammation and tissue damage. The conference was hosted by the American Partnership for Eosinophilic Disorders (APFED), a grassroots organization that strives to educate the medical community about these disorders and to support research. The scientific and educational programming for the three-day event was organized by the staff of Cincinnati Children's.
The conference was attended by 229 adults and 115 children from 25 states and three countries. Cincinnati was selected as the site because the multidisciplinary Cincinnati Center for Eosinophilic Disorders (CCED) at Cincinnati Children's is one of the world leaders in clinical care as well as basic and clinical research on eosinophilic disorders. Activities at this year's conference included a fund-raising walk that raised $16,000 for research. Half was donated to Cincinnati Children's. Presenters and moderators for the educational sessions included Cincinnati Children's staff from Allergy / Immunology, Gastroenterology and Nutrition, Pathology, Psychology, and the Center for Epidemiology and Biostatistics, as well as speakers from Boston Children's, Children's Hospital of Philadelphia, and the University of Utah. Thomas F. Boat, MD, chairman, Department of Pediatrics, and Mitchell Cohen, MD, director, Gastroenterology and Nutrition, as well as City of Cincinnati deputy mayor Alicia Reece made opening remarks.
The Cincinnati Center for Eosinophilic Disorders, directed by Marc Rothenberg, MD, PhD, sees about 275 newly diagnosed patients a year, including children from as far away as England and Australia, says Sean Jameson, program coordinator. "Eosinophilic disorders have been under-diagnosed or misdiagnosed," he notes. "Thanks to the education efforts of APFED and to a pivotal paper on the surprising incidence of eosinophilic disorders, published by our researchers in the New England Journal of Medicine a year ago, more physicians are becoming familiar with these conditions."
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Physicians and Scientists Meet to Discuss Therapy for Eosinophilic Disorders
In May 2005, a group of multidisciplinary physicians and scientists, including Marc E. Rothenberg, MD, PhD, from Cincinnati Children's, participated in a workshop held in Bern, Switzerland, to discuss current and future approaches to therapy for eosinophilic disorders. This workshop resulted in an important paper, which provides guidelines for the classification and treatment of hypereosinophilic syndromes, or HES. Learn more.
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Cincinnati Children's uncovers promising evidence that EE is more common than once thought
In a recent letter to the Editor of The New England Journal of Medicine, researchers at Cincinnati Children's Hospital Medical Center reported findings of a recent population based, demographic study conducted at their pediatric hospital. Researchers reviewed pathology reports occurring from over a 12-year span within the surrounding region of Hamilton County, Ohio and found that the incidence of Eosinophilic Esophagitis, once commonly thought of as a rare disorder, may be higher than that of other well-known inflammatory gastrointestinal disorders, such as Crohn's disease. Symptoms most commonly bringing patients to the physician included feeding disorders, vomiting, abdominal pain, dysphagia, or difficulty swallowing, and food impaction. Also uncovered was a strong familial pattern of the disease, suggesting that these disorders may run in families.
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Cincinnati Center for Eosinophilic Disorders (CCED) Receives Donation
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| Jori Kodroff, age 12, is feeling much better today with the help of her family and the multidisciplinary team of the Center for Hypereosinophilic Disorders (pictured behind her). |
Thanks to the generosity and hard work of a Chicago family and a fundraising organization they founded, the proposed Cincinnati Center for Eosinophilic Disorders (CCED) has received a donation of $81,000 to support research and treatment of this potentially life-threatening medical condition. Twelve-year-old Jori Kodroff, a patient of the new center, was accompanied by her parents, Fred and Ellyn, as well as her grandmother, Charlene Glanz, to present the check on Monday, August 16, 2004, at a gathering of staff from a multitude of disciplines, including Gastroenterology, Hepatology and Nutrition; Allergy and Immunology; and Pathology and Lab Administration. The Kodroff's organization, known as CURED (Campaign Urging Research for Eosinophilic Disease) raised the money by hosting a bowl-a-thon.
The crusade to beat eosinophilic disease is personal for the Kodroffs. Jori was diagnosed with it on December 28, 2002. The condition develops when eosinophils, a type of white blood cell, are found in higher than normal amounts in one or more specific places in the digestive system and / or the blood. Some of the symptoms include: pain, swelling, skin rash, hives, reflux, choking, difficulty swallowing, nausea, vomiting, loss of appetite, abdominal cramping, diarrhea and bowel obstruction. Many people, including Jori, experience nutritional deficiencies. Says Jori's mom, Ellyn, "Her iron counts went down. She wasn't growing. Her appetite was small, and she was nauseated often."
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| Jori is surrounded by her family: (l to r) grandmother Charlene Glanz, mom Ellyn and dad Fred. |
Although eosinophilic disorders are rare, they are occurring with increasing frequency, according to Marc Rothenberg, MD, PhD, director, Allergy and Clinical Immunology. "Our mission is to conduct leading clinical care and basic research concerning the best treatment and cure for these disorders. But we also want to educate health care providers and health authorities about their importance."
The Kodroff family and CURED are planning a holiday boutique for their next fundraising activity in Chicago. Says Ellyn, "We want to encourage people from other states to get involved. We are aware of the expenses incurred by doing research, and we believe CURED can make a difference for people who are affected by eosinophilic disorder."
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