The Global Face of Eosinophilic Esophagitis: Advocacy and Research Groups
Although eosinophilic esophagitis (EoE) has been described in the literature for a substantial period, its recognition as a disease entity on the global stage is still relatively new. It has become a major diagnosis of consideration by medical providers when both adult and pediatric patients present with dysphagia, food impaction, and gastroesophageal reflux-like symptoms. In addition to the clinical work of specialists such as allergy-immunologists and gastroenterologists, the evolution of research organizations and advocacy groups focused on EoE have greatly assisted in bringing attention to, and raising awareness about, this disease. As a result of their efforts, diagnosis and treatment guidelines have been developed, and medical providers now have a specific ICD code for EoE. This represents a new model for the interaction of patients and medical provider, where patients not only advocate for their disorder, but also drive physician education and a patient-centered research agenda and its funding. It should be noted, though, that these organizations and advocacy groups are mainly located in North America and Europe, and as a result, EoE has largely been associated with the Caucasian demographic. However, it has been described in Asia, the Middle East, Latin America, and Africa. Physicians from these areas have increased awareness and understanding in the medical and research communities in their countries through case reports and the establishment and analysis of potential patient cohorts. At this time, the prevalence of EoE in these regions is comparably lower, but this may be due to less recognition and understanding of EoE, as well as medical efforts being directed towards more ubiquitous disease processes, such as infectious diseases. With the support and ongoing work of researchers, patients, and their family members, understanding and recognition of EoE as a clinically significant disease entity will continue to grow.
KeywordsEosinophilic esophagitis Global advocacy Research groups Guidelines ICD
Support: Christine James is supported by NIEHS T32ES010957-17.
Compliance with Ethical Standards
Conflict of Interest
The authors declare that they have no conflict of interest.
Ethical Approval and Informed Consent
There were no ethical approvals or informed consents needed for this type of work.
- 17.Furuta GT, Liacouras CA, Collins MH, Gupta SK, Justinich C, Putnam PE, Bonis P, Hassall E, Straumann A, Rothenberg ME, First International Gastrointestinal Eosinophil Research Symposium (FIGERS) Subcommittees (2007) Eosinophilic esophagitis in children and adults: a systematic review and consensus recommendations for diagnosis and treatment. Gastroenterology 133(4):1342–1363CrossRefPubMedGoogle Scholar
- 19.Liacouras CA, Furuta GT, Hirano I, Atkins D, Attwood SE, Bonis PA, Burks AW, Chehade M, Collins MH, Dellon ES, Dohil R, Falk GW, Gonsalves N, Gupta SK, Katzka DA, Lucendo AJ, Markowitz JE, Noel RJ, Odze RD, Putnam PE, Richter JE, Romero Y, Ruchelli E, Sampson HA, Schoepfer A, Shaheen NJ, Sicherer SH, Spechler S, Spergel JM, Straumann A, Wershil BK, Rothenberg ME, Aceves SS (2011) Eosinophilic esophagitis: updated consensus recommendations for children and adults. J Allergy Clin Immunol 128(1):3–20CrossRefPubMedGoogle Scholar
- 20.Lucendo AJ, Molina-Infante J, Arias A, von Arnim U, Bredenoord AJ, Bussmann C, Amil Dias J, Bove M, González-Cervera J, Larsson H, Miehlke S, Papadopoulou A, Rodríguez-Sánchez J, Ravelli A, Ronkainen J, Santander C, Schoepfer AM, Storr MA, Terreehorst I, Straumann A, Attwood SE (2017) Guidelines on eosinophilic esophagitis: evidence-based statements and recommendations for diagnosis and management in children and adults. United European Gastroenterol J 5(3):335–358CrossRefPubMedPubMedCentralGoogle Scholar
- 21.Sampson HA, Aceves S, Bock SA, James J, Jones S, Lang D, Nadeau K, Nowak-Wegrzyn A, Oppenheimer J, Perry TT, Randolph C, Sicherer SH, Simon RA, Vickery BP, Wood R, Sampson HA, Randolph C, Bernstein D, Blessing-Moore J, Khan D, Lang D, Nicklas R, Oppenheimer J, Portnoy J, Randolph C, Schuller D, Spector S, Tilles SA, Wallace D, Sampson HA, Aceves S, Bock SA, James J, Jones S, Lang D, Nadeau K, Nowak-Wegrzyn A, Oppenheimer J, Perry TT, Randolph C, Sicherer SH, Simon RA, Vickery BP, Wood R (2014) Food allergy: a practice parameter update—2014. J Allergy Clin Immunol 134(5):1016–1025CrossRefPubMedGoogle Scholar
- 24.About APFED [Internet] 2001. [Cited 22 June 2017]. Available from: http://apfed.org/about-apfed
- 25.APFED’S Hope on the Horizon Research Program [Internet] 2001. [Cited 22 June 2017]. Available from: http://apfed.org/research/about-the-hope-on-the-horizon-research-fund
- 26.About CURED [Internet] 2015. [Cited 22 June 2017]. Available from: https://curedfoundation.org/about-cured
- 27.About CEGIR [Internet] [Cited 22 June 2017]. Available from: https://www.rarediseasesnetwork.org/cms/cegir/About-Us/CEGIR
- 28.European Society of Eosinophilic Oesophagitis (EUREOS) [Internet]. 2015. [Cited 22 June 2017]. Available from: http://eureos.online
- 30.History of IES [Internet]. 2017. [Cited 22 June 2017]. Available from: http://www.eosinophil-society.org/about-ies/history-of-ies
- 31.Yu C, Sterling D, Albayati I, Al-Obaidi S, Moraveji S, Bustamante MA et al (2017) The prevalence of biopsy-proven eosinophilic esophagitis in Hispanics undergoing endoscopy is infrequent compared to Caucasians: a cross-sectional study. Dig Dis Sci 62(12):3511–3516. https://doi.org/10.1007/s10620-017-4791-8 CrossRefPubMedGoogle Scholar
- 32.García-Compeán D, González González JA, Marrufo García CA, Flores Gutiérrez JP, Quintana OB, Rodríguez GG et al (2018) Causes of infrequent prevalence of eosinophilic esophagitis in Hispanics may involve social and cultural factors: probable role of digestive microbiota. Dig Dis Sci 63(2):534–535. https://doi.org/10.1007/s10620-017-4902-6 CrossRefPubMedGoogle Scholar
- 33.De la Cruz-Patiño E, Ruíz Juárez I, Meixueiro Daza A, Grube Pagola P, Roesch-Dietlen F, Remes-Troche JM (2015) Eosinophilic esophagitis prevalence in an adult population undergoing upper endoscopy in southeastern Mexico. Dis Esophagus 28:524–529. https://doi.org/10.1111/dote.12238 CrossRefPubMedGoogle Scholar
- 34.Furuta K, Adachi K, Kowari K, Mishima Y, Imaoka H, Kadota C, Koshino K, Miyake T, Kadowaki Y, Furuta K, Kazumori H, Sato S, Ishihara S, Amano Y, Honda M, Kinoshita Y (2006) A Japanese case of eosinophilic esophagitis. J Gastroenterol 41:706–710. https://doi.org/10.1007/s00535-006-1827-9 CrossRefPubMedGoogle Scholar
- 39.Baruah B, Kumar T, Das P, Thakur B, Sreenivas V, Ahuja V, Gupta SD, Makharia GK (2017) Prevalence of eosinophilic esophagitis in patients with gastroesphageal reflux symptoms: a cross-sectional study from a tertiary care hospital in North India. Indian J Gastrenterol 36(5):353–360. https://doi.org/10.1007/s12664-017-0789-6 CrossRefGoogle Scholar
- 47.Zifman E, Banai H, Shamir R, Ringel-Kulka T, Zevit N (2018) Practice differences in the diagnosis and management of eosinophilic esophagitis among adult and pediatric gastroenterologists in Israel. J Pediatr Gastroenterol Nutr. https://doi.org/10.1097/MPG.0000000000001909