Eosinophil

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Eosinophilic Support Group

 

 

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Eos in the News!

 

2010:

 

 

 

BIG NEWS!!!!

Gene Site Found For Eosinophilic Esophagitis!!!!!

 

According to a press release from CHOP and article found on EurekaAlert:  “EoE was linked to a region of chromosome 5 that includes two genes. The likely culprit is the gene TSLP, which has higher activity levels in children with EoE compared to healthy subjects. In addition, TSLP has been previously linked to allergic inflammatory diseases, such as asthma and the skin inflammation, atopic dermatitis.”

 

http://www.eurekalert.org/pub_releases/2010-03/chop-gsf030410.php

 

 

 

 

The 4th annual

National Eosinophil Awareness Week was

5/16 – 5/22/10

 

That week was be a great time to spread awareness;

however, every day is a good day to raise awareness about Eosinophilic Disorders!

 

 

 

2009:

 

 

 

Just in time for Eosinophilic Awareness Week 2009,

actress/singer Demi Lovado (Disney star)

and Ned Spektor (manager for the Jonas Brothers)

were honored as APFED's Education Embassadors.

 

A link to the video of their touching speeches

at the 5/11/09 Gala in Hollywood is below:

 

http://www.youtube.com/watch?v=KDV4lq3LU_4

 

You can find more information at

 

http://apfed.org/

 

 

 

 

Here’s a link to a wonderful, informative new (9/08) article

about Eosinophilic Gastrointestinal Disease!

 

http://parasolservices.com/publication/EGIDs.pdf

 

 

 

 

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!

 

http://www.people.com/people/archive/article/0,,20171285,00.html

 

 

 

 

Extreme Makeover – Home Edition

 

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. You may recognize Dr Liacouras, Dr Spergel, Dr Brown and Michele Shuker who were shown when the family was visiting CHOP.

 

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 do NOT 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).  It’s also now available on You Tube.

 

 

 

 

The new ICD-9 codes have been approved!!!!

You can read the press release here:

 

http://apfed.org/downloads/ICD9%20codes%20approved_RWB1.pdf

 

The new codes are:
530.13 - eosinophilic esophagitis

535.7 - eosinophilic gastritis
558.41 - eosinophilic gastroenteritis

558.42 - eosinophilic colitis.

These codes became effective on Oct. 1, 2008

 

 

 

 

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).

 

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

 

 

 

 

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.