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NJ/PA Eosinophilic Information provides news and direction toward resources for those dealing with Eosinophilic Esophagitis (EoE) and other Eosinophilic Gastrointestinal Disorders (EGID). 


The idea of learning about a newly diagnosed health issue can be quite daunting.  Hopefully the information provided here will help make it a little easier. 

 

Please note our Links section for a list of Eosinophilic Treatment Centers around the country, organizations that assist the eosinophilic community, and links to information about food products that may be helpful with elimination diets.

 

Our Support page lists support groups that can be found online and around the U.S., as well as groups in Canada, the U.K. and Australia.

 

Our Advocacy section provides information that may be helpful if your child needs a 504 plan or an IEP in school.

 

 

 

 

Important New Advocacy Resources:

 

Just in time for the new 2012 school year, APFED now has very helpful videos/webinars available on their website as well as on YouTube and will be adding more in the near future.  Some of the videos/webinars now include: 

·         “How Do I Inform My Child’s School and What Do They Need To Know?”

·         “What is Section 504 and How Does It Impact Sending a Child To School With an Eosinophilic Disorder?”

·         “All About EoE

They now also have a specific section for School Advocacy, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophilic-Associated Disorders (EoE / EGID):

 

·         Overview

·         Getting Started

·         Section 504 Eligibility

·         IEP Eligibility

·         Elementary School Accommodations

·         Middle School and High School Accommodations

·         Post-Secondary School Accommodations (College and Beyond)

·         Frequently Asked Questions

·         Info For School Staff

·         Guidelines for Students With Chronic Illnesses (NIH resource)

·         Templates and Forms (for 504 plans and IEPs)

 

Please take time to visit each of the above helpful advocacy links if you are potentially in need of a 504 plan or IEP for your child with EoE / EGID.

FAAN also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pet Wright of Wrightslaw.com.  This web feature is only available to registered FAAN members at:

http://www.foodallergy.org/page/july-august-2012---pete-wright-

 

 

 

National EoE Summit in Washington, DC

 

On June 22, 2012, the 2nd annual National EoE Summit was held at the Ritz-Carlton, Tysons Corner, in McLean, VA.  It was an event specifically for physicians.  It featured leaders in the field of Eosinophilic Disorders who discussed the latest developments.

 

You can watch a video of Dr. Wendy Book, current president of APFED, speaking at the summit on APFED’s YouTube channel.

 

Dr. Book spoke about the history of APFED and how awareness and understanding of eosinophilic disorders has evolved over the years, as well as the challenges facing parents and patients. 

http://youtu.be/BhCNWbBG1lc

 

 

 

NJ/PA Elemental Formula Legislation

 

There is a new Facebook community to support elemental formula legislation in NJ & PA. There will be a new bill introduced to the NJ state legislature in March. Please stay up-to-date with what is needed to get it passed so you can contact your assemblymen/women and state senators, asking for their support when the time comes. Info will be posted at 

https://www.facebook.com/pages/NJPA-Support-for-Formula-Legislation/215841811847087 

 

Update:  Assemblymen John Amodeo (R) and Chris Brown (R) will reintroduce A-3830, which, if passed, would mandate health insurance coverage for certain amino acid-based elemental formulas for eosinophilic disorders.  Both welcome other assembly members to join them in sponsoring the bill.  Assemblyman Dan Benson (D) has already expressed a desire to do so.

 

Other assembly members' staff may contact Tom Suthard at Assemblymen Amodeo and Brown's office to indicate their interest in becoming a sponsor.  Their phone # is 609-677-8266.

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Camp TAG

 

FAAN’s Camp TAG, a new day camp for kids 4-12 who are dealing with food allergies,

opened in 2011.  Please check with them for the 2013 camp dates.  In 2012, the dates were July 9-13 and it was held at Tall Pines Day Camp in Williamstown, NJ.


The camp provides a safe place for children with food allergies and their siblings.  It allows them to have fun and affords them the opportunity to meet other children who share the same condition, which also teaches them that they are not alone.

 

 

 

The 6th annual

National Eosinophil Awareness Week

(“NEAW”) is  5/13 – 5/19/12

 

While NEAW is a great time to spread awareness about Eosinophilic Disorders, in reality we

can try to raise awareness every day!

 

You can find more information and suggestions for ways to spread awareness at

http://apfed.org/drupal/drupal/national_eosinophil_awareness_week

 

APFED has made the current issue of their EOSolutions Newsletter available to the general

public (it is usually only available to members).  This will undoubtedly make it even easier to educate others and raise awareness. 

 

Please check our Fundraisers Page for information about local fundraisers during this week.

 

To watch Dr Wendy Book, current president of APFED, speaking at the 2012 National EoE Summit in VA, please visit APFED’s You Tube Channel or go to this video directly at http://youtu.be/BhCNWbBG1lc.  Dr Book speaks about the history of APFED and how awareness and understanding of eosinophilic disorders has evolved over the years, as well as the challenges facing parents and patients.

 

In May of 2009, actress/singer Demi Lovado (Disney star) and Ned Spektor (manager for the Jonas Brothers) were honored as APFED's Education Embassadors.  Here is a link to the video of their touching speeches at the 5/11/09 Gala in Hollywood:

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

 

 

 

 

New consensus recommendations for the diagnosis and management of EoE!

 

This is an important article to read if you are dealing with

Eosinophilic Esophagitis!

 

"Eosinophilic Esophagitis: Updated consensus recommendations for children and adults"


(from
The Journal of Allergy and Clinical Immunology

 Volume 128, Issue 1 , Pages 3-20.e6, July 2011)

http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext

 

BIG NEWS!!!!

Gene Site Found For Eosinophilic Esophagitis!!!!!

 

According to a press release from CHOP and article found on EurekaAlert, among other sources:

 

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

 

 

 

ICD-9 Codes

 

Please make sure your Drs are using the new ICD-9 codes, which became effective on 10/1/2008! 

 

The new codes are:
530.13 - eosinophilic esophagitis
535.7 - eosinophilic gastritis
558.41 - eosinophilic gastroenteritis

558.42 - eosinophilic colitis.

We needed these 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

 

Over the past few years, American Partnership for Eosinophilic Disorders (APFED) worked with the CDC's Center for National Health Statistics (NCHS) to create unique ICD-9-CM diagnosis codes for eosinophilic gastrointestinal disorders.  It was very important that new specific ICD-9-CM diagnosis codes be created for eosinophilic gastrointestinal disorders (EGIDs). 

 

 

National Eosinophil Awareness Week

 

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

 

National Eosinophil Awareness Week is 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 who initiated it,

~And~

THANK YOU to all of the congressmen & women who agreed to co-sponsor the resolution!

 

Please see the NEWS Page for details.

 

 

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****DISCLAIMER****

This website has been set up by the parent of a child with an eosinophilic disorder, not a doctor.  The information shared on this website is not intended to replace advice from your licensed healthcare provider.  Decisions regarding medical care should always be made with your licensed healthcare provider.  Please consult your doctor before making any changes in medical care.  No one should ever disregard or delay seeking medical advice due to the content of this website.