Eosinophilic disease is a rare disorder in which elevated amounts of eosinophils, a type of white blood cell, are found in one or more parts of the gastrointestinal tract. Eosinophils are involved in regulating allergic and immune response reactions. When the body produces too many eosinophils, it causes inflammation in the surrounding areas and leads to tissue damage. Also, the digestive system may display abnormal function, such as dyspepsia, obstruction, diarrhea or ascites production.
Eosinophilic disease is diagnosed and/or defined by where the elevated levels of eosinophils are located.
Eosinophilic disease is a rare disorder in which elevated amounts of eosinophils, a type of white blood cell, are found in one or more parts of the gastrointestinal tract. Eosinophils are involved in regulating allergic and immune response reactions. When the body produces too many eosinophils, it causes inflammation in the surrounding areas and leads to tissue damage. Also, the digestive system may display abnormal function, such as dyspepsia, obstruction, diarrhea or ascites production.
Eosinophilic disease is diagnosed and/or defined by where the elevated levels of eosinophils are located.
EoE affects about 1 out of 2,000 individuals and EG affects about 1 in 10,000. Both are more prevalent in men. Age prevalence is 20-50 years.
Eosinophilic disease individuals have other allergy related diseases, such as, rhinitis, asthma, or eczema.
Some families show a genetic inheritance patterns in developing EoE.
The cause of eosinophilic disease is unknown.
In Eoe, it is believed that affected individuals have food or environmental allergies that triggers an immune response to specific foods. The gene CAPN14 can play a role in EoE and is expressed primarily in the esophagus.
The symptoms of eosinophilic disease varies from one individual to another, some common ones include:
Narrowing of the esophagus which cause food to become stuck or impacted; it may lead to a medical emergency at times.
Specific symptoms depend on where eosinophilic reactions are occurring. The most common area is the stomach and small intestine. If it involves the muscle layers, it can lead to malabsorption, abdominal pain, vomiting, or bowel obstruction. If it involves the inner layers, it can cause ascites or pleural effusion.
Most affected individuals have elevated levels of IgE, a class of antibodies involved in allergic reactions, and eosinophils in their tissue and blood. Eosinophilic disease is diagnosed by a biopsy. A biopsy is the only method of diagnosis that can distinguish eosinophilic disease from other digestive disorders. If a diagnosis is confirmed, allergy testing is essential to help guide therapy and treatment.
The treatment of eosinophilic disease is medical and/or dietary therapy. There are medications available to control eosinophils in the different parts of the body.
The common dietary therapies are:
Eosinophilic disease is life long and there is currently no cure. Adhering to medication and/or dietary therapy can aid help prognosis.
EoE is a chronic disease but does not limit life expectancy. With the proper treatment, affected individuals can have a normal life.
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.
Enrolling is easy.
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.
Visit sanfordresearch.org/CoRDS to enroll.
I was diagnosed in 1998 with SCLS. I had been ill for 6 months, and gained 80 lbs. I was given prednisone too prevent an allergic reaction to a test. It worked wonders, and I lost the fluid. I...
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