Eosinophilic Disease is a digestive system disorder in which elevated amounts of white blood cells are found in the digestive system.
My daughter was diagnosed with eosinophilic gastroenteritis when she was 16 years old. She passed away last March at the age of 27. The disease quickly overwhelmed her and she died from a retroperitoneal hemorrhage. The doctors she had seen during the weeks prior to her death didn't have a clue.
My 2 year old son was diagnosed with Eosinophilic Esophagitis in January 2009. He is continuing to get worse and I feel like the drs aren't treating him aggressively enough or fast enough. I'm seeking opinions/advice/comments from those who deal with this on a day-to-day basis- patients and parents. Thanks in advance. Hugs~ Casey
Hi, I'm new to online discussion and looking to chat w/ others who have HES and what treatments have worked etc. Looking to be a support and find support as well. Have a blessed day.
Some people in this community might be interested in a clinical trial in pediatric eosinophilic esophagitis patients to study Oral Viscous Budesonide (OVB) being conducted. This trial is evaluating the safety and efficacy of OVB in children and adolescents and is being conducted at multiple centers of excellence in the treatment of gastrointestinal diseases in the U.S. This study, which has a 12-week treatment period, includes patients 2 to 18 years of age and is evaluating three different doses of OVB versus an inactive medicine. The study is measuring each patient’s response to therapy by measuring the number of eosinophils in the esophagus before and after OVB administration, as well as evaluating the changes in the patients’ symptoms. Budesonide has been approved by the Food and Drug Administration for treating asthma and other diseases in children and adults. The oral formulation of budesonide being used in the clinical study is designed to deliver budesonide to the esophagus and is intended to treat local eosinophilic inflammation and associated symptoms. More information about the trial can be found: http://clinicaltrials.gov/ct2/show/NCT00762073?term=Meritage&rank=2 or by consulting your physician.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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Created by valerieitkin | Last updated 19 Mar 2009, 02:49 PM
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