Eosinophil

Welcome to the NJ/PA   Eosinophilic Support Group

 

 

 

 

Eos in the News!

 

People Magazine Article – 1/21/08 issue, page 121

 

Our own Annette Turner (one of the former leaders of this support group) and her son Adam are featured in an article in the 1/21/08 issue of People Magazine!  It’s a wonderful article and is great for helping spread awareness about EE.  Good job Annette, Mike & Adam!

 

 

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A family in Idaho was selected to receive an Extreme Home Makeover.  All 4 kids have eosinophilic disorders throughout their GI tracts (Eosinophilic Enteropathy), in varying severity (but all quite severe), but it is also in other organs as well.  Their issues go beyond “just” EE.  Well, the family not only received a new home (built in a week), but they were flown to CHOP to be evaluated by the Drs here!  It’s bringing much needed attention to eosinophilic disorders & it’s great PR for CHOP to boot.

 

Congratulations to the Stockdale Family of Middleton, ID!   While they might not live in our area, they are still part of our eosinophilic community.  

 

**Update**:  For anyone who has saw 12/2/07 episode of Extreme Home Makeover (about the Stockdale Family) and are nervous that your EE/EGID child may wind up like them, remember that the kids in that particular family have more going on than “just” Eosinophilic Esophagitis or Eosinophilic Gastrointestinal Disorders.  Those kids have problems in other organs, not just their GI tracts.   While EE/EGIDs themselves are definitely life-altering and awful to live with, they are not fatal and they don’t spread to other organs. 

 

Remember, if you are concerned about information you have seen or heard on TV or elsewhere, address those concerns with your Dr to get accurate information.

 

If you missed the show and want to watch it online, you can do so at http://dynamic.abc.go.com/streaming/landing (just Click on Extreme Makeover Home Edition & look for the Stockdale Family’s episode).

 

 

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The long-awaited ICD-9 codes are being addressed.  It is very important that you write to express your support for these desperately needed codes!

 

Here is a copy of a note from APFED addressing this:

 

Urgent support is needed to create new ICD-9-CM diagnosis codes for
eosinophilic gastrointestinal disorders (EGID)s. Over the past year,
American Partnership for Eosinophilic Disorders (APFED) has been
working with the CDC's Center for National Health Statistics (NCHS)
to create unique ICD-9-CM diagnosis codes for eosinophilic
gastrointestinal disorders. We now need your support in writing a
letter of support for this proposal.

Requested codes include:
530.13-eosinophilic esophagitis
535.41-eosinophilic gastritis
558.41-eosinophilic gastroenteritis and eosinophilic enteritis
558.42-eosinophilic colitis.

We need unique ICD-9 codes for EGIDs in order to;
• Allow researchers to track or identify patients with these
disorders;
• Develop new treatments specific for EGIDs;
• Permit accurate reporting of EGIDs
• Improve awareness and coding

On September 28, 2007, Dr. Glenn Furuta (Associate Professor of
Pediatrics at The Children's Hospital Denver) presented Apfed's
request at the ICD-9-CM Coordination and Maintenance Committee
meeting held at the CMS Auditorium in Baltimore, Maryland. The major
comment following his presentation was a concern that the new codes
would make it difficult to differentiate between food allergic
diseases and EGIDs. We feel strongly that the current medical
literature supports that EGIDs are unique disorders and warrant
specific ICD-9 codes.

Final approval of these codes for inclusion in the 2009 ICD-9-CM
depends on your letter of support. Your letter will provide vital
evidence to the NCHS that unique ICD-9-CM codes are needed for
eosinophilic gastrointestinal disorders. Send your letter to NCHS
(and a copy to Apfed) by the October 12, 2007 deadline. NCHS
requests that you either fax or email your letter to Donna Pickett or
Dr. David Berglund at:
• FAX number (301) 458-4022
• Donna Pickett Email: dfp4@cdc.gov
• David Berglund Email: zhc2@cdc.gov

We encourage you changes or personalize the sample letter below.
Please use any of the information from the APFED website, this email,
or your own data to make your letter unique. If you have any
questions or comments, please contact us at (713) 498-8216 or
mail@apfed.org. Thank you for your support of this very important
proceeding.

Sample Support Letter:

(Date)
Donna Pickett (or Dr. David Berglund)
National Center for Health Statistics
ICD-9-CM Coordination and Maintenance Committee
3311 Toledo Road, Rm 2402
Hyattsville, MD 20782

FAX number (301) 458-4022
Donna Pickett Email: dfp4@cdc.gov
David Berglund Email: zhc2@cdc.gov

Re: Support of new ICD-9-CM codes for Eosinophilic Gastrointestinal
Disorders

Dear Donna Pickett (or Dr. Berglund):

I (or your organization's name) strongly support American Partnership
For Eosinophilic Disorders (APFED) proposal for the creation of
unique ICD-9-CM codes for eosinophilic gastrointestinal disorders as
presented on September 28, 2007. Since there are currently no
specific ICD-9-CM codes for EGIDs, these new codes will greatly
improve the accuracy and consistency of coding for these disorders.
The new codes will also help researchers identify and track EGID
patients, and aid in the development new therapies specific for EGIDs.

(If you have any data, personal experiences with EGIDs, or approve of
the code changes for eosinophilic gastritis suggested by Nelly Leon-
Chisen (AHA), you should also include this information in your
letter. In closing, you should urge NCHS to adopt unique ICD-9 codes
for eosinophilic gastrointestinal disorders)

While these disorders do have some aspects of allergy and immune
dysregulation, current medical literature demonstrates that
eosinophilic gastrointestinal disorders are unique and distinct
disorders, and thus merit their own unique ICD-9-CM codes. I urge
NCHS to adopt these proposed codes.

Sincerely,
Your name
Organization (if applicable)
Address
Phone Number

 

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It’s official!  The first ever

“National Eosinophil Awareness Week”

5/13 – 5/19/07

 

The resolution (House Resolution 296) was unanimously passed on 5/15/07!

It is officially set for the 3rd week of May, every year from here on out!

 

Having this week will help raise awareness for all eosinophilic disorders

(EE, EGID, HES & Churg Strauss).  Next year there will be a lobbying day in DC.

Please keep that in mind, because it sounds like we’ll all be invited to attend.

 

Congratulations to everyone who worked so hard to get this passed

(within a month, no less),

Thanks to the parents at APFED for initiating it,

~And~

THANK YOU to all of the congressmen & women

who agreed to co-sponsor the resolution!

 

 

The full text of the resolution is below:

 

H. Res. 296: Supporting the goals and ideals of National Eosinophil Awareness Week, and for other purposes

HRES 296 IH

110th CONGRESS

1st Session

H. RES. 296

Supporting the goals and ideals of National Eosinophil Awareness Week, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

April 16, 2007

Mr. LARSON of Connecticut submitted the following resolution; which was referred to the Committee on Education and Labor

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RESOLUTION

Supporting the goals and ideals of National Eosinophil Awareness Week, and for other purposes.

*      Whereas the term `eosinophilic disorders' is a general term used to describe a group of diseases and disorders caused by the production of too many white blood cells called eosinophils;

*      Whereas eosinophilic disorders patients suffer from their immune system attacking their body's own normal, healthy tissue, resulting in inflammation or swelling;

*      Whereas an estimated 50,000 people are affected by eosinophilic disorders in the United States, many of whom remain undiagnosed or misdiagnosed;

*      Whereas inflammatory eosinophilic disorders are thought to be both allergic and autoimmune diseases, such that the body's immune system, which normally fights infections and viruses, mistakes common food proteins and environmental allergens as foreign;

*      Whereas eosinophilic disorders cause chronic illness that significantly impacts a person's quality of life and ability to attend school and work, and dramatically alters dietary lifestyles;

*      Whereas some eosinophilic disorders cause life-threatening and sometimes fatal illnesses by causing inflammation of the vital organs, such as the heart, lungs, kidney, and gastrointestinal tract;

*      Whereas eosinophilic disorders are difficult to diagnose and treatment is often delayed, resulting in unnecessary suffering;

*      Whereas many patients with eosinophilic disorders often have severe long-term disabilities as well as the severe limitations imposed by the disease itself;

*      Whereas some eosinophilic disorder patients will suffer permanent irreversible organ damage as a result of delays in diagnosis and proper treatment; and

*      Whereas the American Partnership For Eosinophilic Disorders has identified the third week of May as an appropriate time to recognize National Eosinophil Awareness Week in order to educate communities across the Nation about eosinophilic disorders and the need for research funding, accurate diagnosis, and effective treatments: Now, therefore, be it

Resolved, That the House of Representatives--

(1) supports the goals and ideals of National Eosinophil Awareness Week; and

(2) encourages health care providers and the American Partnership for Eosinophilic Disorders to increase education and awareness regarding eosinophilic disorders.