I was just diagnosed with this disease Eosinophilic esophagitis

For years I have told my doctors I choke on food and somedays it is really bad as you cannot get the food up or down..if you are alone it can get really scarey as you can hardly imagine not being able to breath as bread or meat is stuck in your airway...my girls are use to mom going to the other room trying to cough, spit or get what ever is stuck out of the way...I was finally sent to a GI specialist in May that did the barium study and then was told I would need to have an endoscope to see what else might be wrong...that was last Monday and on Friday she called to tell me I had Eosinophilic esophagitis...I was like can you spell that for me...then on Monday of this week Aug 4 I had another appointment with her and she told me more about this and I would be put on an inhaler and sent to an allergist for food testing...that is on Aug 23 of this month..never dreamed all of this from choking on food...now the strange thing is my brother also has had this for years and they could not find out what was wrong with him so he now has an appointment with the same doctor and she is going to scope him to see if he is also diagnosed with Eosinophilic esophagitis. She told me they do not know a lot about it and if it is hereditary so this should be interesting if we both are effected by this and all these years no one could tell us what is wrong with us...then to find out they just put medical codes to this disease in July is amazing...will let you know how this goes...hugs, cheryl

PS Having an MRI of my neck on Thursday as it is not getting better with the injections I have had in the last two months...


APFED Announces Approval of ICD9 codes for Eosinophilic Gastrointestinal Disorders

(July 15, 2008) APFED announced today that ICD-9-CM codes have been approved for
Eosinophilic Gastrointestinal Disorders, EGID, by the National Counsel for Health Statistics, NCHS. APFED submitted its proposal to the NCHS in September 2007 for four diseases: eosinophilic esophagitis, gastritis, gastroenteritis and colitis, all types of EGIDs. Thousands of patients suffer from these debilitating disorders; however until now they could not be coded correctly, making it difficult for medical professionals or researchers to determine how large a percentage of the population had these disorders.

The ICD-9-CM coding system is an international classification system which groups related diseases and procedures for the purpose of reporting statistical information. ICD- 9-CM codes provide a uniform language, and thereby serve as an effective means for reliable nationwide communication among physicians, patients, and third parties (QCMetrix.com). ICD-9-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

Even though suggestions for ICD-9-CM codes are normally not initiated by patient advocacy organizations, APFED, in keeping with its progressive mission to create awareness of EGID, felt the need to be at the forefront of these requests. Over the last two years, APFED worked with the Centers for Disease Control and Prevention’s Center for National Health Statistics to create unique ICD-9-CM diagnosis codes for EGID.

"Approval of these ICD-9-CM codes will permit accurate classification of these disorders and bring recognition of EGID to a new level", stated Beth Mays, APFED President and Founder.

NCHS has classified the following codes to designate the specific catagories of EGID:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis

Eosinophilic Gastrointestinal Disorders, EGID, are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Recent demographic studies estimate that more than 1:2000 children live with eosinophilic esophagitis, in which only the esophagus, the tube connecting the mouth to stomach, is affected. Statistics on the adult population are currently unknown.

As the medical community becomes more aware of Eosinophilic Disorders, these numbers are expected to rise. Due to the lack of awareness among the medical community and the general public of these disorders, patients may wait 2 to 4 years to obtain an accurate diagnosis and receive proper treatment. More often than not, these disorders are misdiagnosed as other diseases.

Treatments for these disorders include total food elimination, requiring patients to live off an elemental formula which can be taken either orally or via a feeding tube; limited/restricted diets; and/or steroid treatments. There is currently no cure for EGID.

EGIDs are becoming increasingly common, with an incidence similar to household names such as Crohn’s and ulcerative colitis. Due to lack of accurate reporting, the true prevalence is not known, a problem APFED feels the new ICD-9-CM codes will solve. Unique codes are needed in order to allow researchers to track or identify patients with these disorders, develop new treatments, permit accurate reporting of EGIDs, and improve awareness.

APFED, a non-profit 501(c)3 volunteer-run patient advocacy organization, supports patients and families living with eosinophilic disorders.

For more information, please contact Beth Mays at 713-498-8216.

American Partnership for Eosinophilic Disorders (APFED) is a 501c3 non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.