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Welcome to NJ/PA Eosinophilic Information |
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We have a new name! Recently renamed “NJ/PA Eosinophilic Information”, we provide
news and direction toward resources in the New Jersey / Pennsylvania area, as
well as across the internet, for those dealing with Eosinophilic Esophagitis
(EoE) and other Eosinophilic Gastrointestinal
Disorders (EGID). 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 new Support page lists support groups that can be found
online and around the U.S., as well as groups in the U.K. and Australia. While this site
was initially created to provide information for local support of those
dealing with eosinophilic esophagitis
and eosinophilic gastrointestinal disorders, the
scope and purpose has expanded. |
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Happy
10th Anniversary to the American
Partnership for Eosinophilic Disorders! That’s 10 years of
education, advocacy and research! So
much has been accomplished, but there is still so much more to be done! APFED
has also just added new interactive
pages for kids to their website, with new
characters: “Gus” the esophagus and “Phil” the eosinophil |
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9/6/11
UPDATE: Congratulations to CURED
Foundation. They were the Central
Region winners in the Vivint.givesback project, and
have won $100,000! |
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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" Volume 128,
Issue 1 , Pages 3-20.e6, July 2011) |
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REGID - Registry for Eosinophilic Gastrointestinal
Disorders There is now a Registry for Eosinophilic
Gastrointestinal Disorders (REGID) at
http://regid.org/ Patients
with Eosinophilic Esophagitis (correctly abbreviated EoE) and Eosinophilic
Gastrointestinal Disorder (EGID) can register soon, but they are still
working on the login and registration form and it is not ready yet. REGID
was funded by the NIH and is a national registry of people affected by
EoE/EGID. More info can be found on their site, as well as a short video by
two of the Drs involved (from Cincinnati). The following paragraph was taken
from their website: "The
Registry for Eosinophilic GastroIntestinal Disorders (REGID) is a
collaboration of medical centers, professionals, families, and individuals
whose mission is to improve the knowledge, research, and outcomes for people
living with eosinophilic gastrointestinal disorders. REGID is not only a
national registry of people affected by eosinophilic gastrointestinal
disorders but also a forum to enhance the connection of people to resources
and research." They
also have informational pages about EoE/EGID. It sounds like it will be a
beneficial resource! Please continue to check back on the site and when it is
all up and running, be sure to register all those diagnosed with EoE or EGID
as this will not only lead to a better count of how many people have the disorders,
but may lead to further research grants specifically for the disorders, new
treatments, etc! |
Amazing News for Eosinophilic Disorders
and Food Allergies in General On July 13, 2010, the top 200 charities were
announced in
Chase Community Giving. Out of 500,000
charities that entered,
APFED (American Partnership for Eosinophilic Disorders), CURED (Campaign Urging
Research for Eosinophilic Disease) and Kids
With Food Allergies were ALL voted
into the top 200 and they will receive $20,000 EACH. That comes to
$40,000 specifically for Eosinophilic Gastrointestinal Disorders out of a
total of $60,000 that benefits food allergies! Every vote really did
count in this one and it was a real nail-biter, but thankfully it was also a
huge success! “Key research on eosinophils has confirmed the important role
they play in inflammatory diseases of the upper GI tract,” says Griffin P.
Rodgers, M.D., director of NIDDK, co-sponsor of CoFAR. “We hope that the new
genetic studies involving EGIDs will help researchers identify and develop
novel treatments.” “We are pleased to continue our support of CoFAR, NIAID’s major
program dedicated to exploring the causes of food allergy and developing new
treatment and prevention strategies,” says Daniel Rotrosen, M.D., director of
the Division of Allergy, Immunology and Transplantation at NIAID. “By
expanding CoFAR’s research goals to include studies of the genetic components
of food allergy, and broadening the research to include food
allergy-associated diseases like EoE, we expect that its work will continue
to increase our understanding of how food elicits an allergic reaction in certain
people.”
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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 |
To help you better understand how Eosinophilic
Gastrointestinal Disorders affect families |
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We need to
act! The NIH (National
Institutes of Health) currently sets aside $0 annually for EE/EGID research,
despite the increasing prevalence of the disorders (the estimated prevalence
of Eosinophilic Esophagitis in 2007 was 1 in 2000). If you are
interested in helping in the push to getting Eosinophilic Disorders on the
annual NIH funding list, please phone & email your senators,
Representatives and the NIH. Let them know Eosinophilic Disorders have
ZERO annual funding earmarked for research and how important that research money
would be. Let them know how the disease affects you and your family. We need our
legislators to petition the NIH to add Eosinophilic Gastrointestinal
Disorders to the list of diseases that get annual NIH research funding, but
they need to hear from their constituents, to let them know how
important this is. |
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APFED (American Partnership For Eosinophilic
Disorders) has created a wonderful new cookbook It’s
called: “Extreme
Cooking for Exceptional Diets” The
cookbook is available at the
APFED website.
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The 4th annual National Eosinophil Awareness Week was 5/16 – 5/22/10 While
that week was a great time to spread awareness, every day is a good day to
raise awareness about Eosinophilic Disorders ! Last
year at this time, actress/singer Demi
Lovado (Disney star) and Ned Spektor (manager for the Jonas Brothers) were
honored as APFED's Education Embassadors. Here's 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 |
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New ICD-9 codes became effective on 10/1/2008!
558.42 - eosinophilic colitis. these disorders; 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. |