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Welcome to NJ/PA Eosinophilic Information |
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Eosinophils
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What is EoE?
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What is
EGID?
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Resources
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Links
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Support
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News
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Contact
Us
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Helpful Links:
(Eosinophilic Treatment Centers and Organizations
are at the top,
formula/medication assistance links are
in the middle,
and food help is at the bottom)
Eosinophilic Treatment Centers:
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Children's
Hospital of Philadelphia's Center for Pediatric Eosinophilic Disorders The Clinic Coordinator is Michele Shuker 267-426-7003
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University
of Pennsylvania Hospital (HUP) The Joint Penn-CHOP Center for Digestive Health. Adult GI’s who truly understand Eosinophilic Esophagitis (EoE) and can properly diagnose and treat it are seemingly
hard to find at this point in time, but thankfully that is changing,
especially in our area. There is now
an Eosinophilic Esophagitis Clinic
at University of Pennsylvania Hospital
(HUP), which is actually part of a larger joint effort between sister
hospitals HUP and CHOP,
The
Joint Penn-CHOP Center for Digestive Health. Dr. Gary
Falk (GI at HUP/Penn Medicine), one of the doctors who treat adult
patients with Eosinophilic Esophagitis, and Dr. Chris Liacouras (GI at CHOP) also
are the co-directors of
a
new program to “provide
inter-disciplinary care (gastroenterologists, allergists, nutritionists and
others) together to deliver state of the art care and access to clinical
trials to all patients with eosinophilic esophagitis in the Delaware Valley and nationally as they
make the transition from adolescence to young adulthood (age 18).” They
take new adult patients at the clinic as well. The
section for Eosinophilic
Esophagitis on the
new website for
The
Joint Penn-CHOP Center for Digestive Health is http://www.med.upenn.edu/jointcenterfordighealth/EoE.shtml. To
contact University of Pennsylvania Hospital for a GI appt, you
can call 215-349-8222 (press 1 for
appointments) or 800-789-PENN (7366). New patients
must call 877-204-9213 to register before setting up an appointment. |
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Other
U.S. hospitals with EoE/EGID clinics If you are visiting this site from other areas of the
country and cannot travel to CHOP or U of P, below is a list of other hospitals across
the country that have experience with EoE. Some also have experience with other EGIDs. University of Pennsylvania Hospital Dr Gary Falk, GI (adult patients) Mt. Sinai Medical Center (NY) Drs Mirna Chehade (GI) and Hugh A. Sampson (Allergy) Denver Children’s Hospital Gastrointestinal
Eosinophil Disease Program (GEDP) Dr Glenn Furuta Cincinnati Children's Hospital Center for Eosinophilic
Disorders
Children’s Specialists of San Diego Eosinophilic Gastrointestinal Disorders Clinic Greenville Hospital System University
Medical Center Dr Jonathan Markowitz, Greenville,
SC. Mayo Clinic, Minnesota Dr
David Katzka (very experienced w/ EoE in
adults) Children’s
Hospital of Boston
Eosinophilic Gastrointestinal Disease Program
Northwestern University, Feinberg School of
Medicine, Chicago, IL. Center for Eosophageal Disease Connecticut Children’s Medical Center Digestive Disease/Gastroenterology Coming soon:
SouthEast Eosinophilic Disease Center Of
Atlanta The
above treatment locations are not the only ones available. More Drs are beginning to recognize and
treat Eosinophilic Gastrointestinal Disorders, so the above list only
represents those that we know of at this time. |
Registry for Eosinophilic Gastrointestinal Disorders:
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The Registry for Eosinophilic Gastrointestinal Disorders
(REGID) REGID was
developed and launched by Cincinnati Children’s Hospital Medical Center
(CCHMC); however, physicians from other medical institutions also
participate. http://regid.org/learn/institutions
(participating hospitals) http://regid.org/learn/acknowledgements
(those involved) From Cincinnati’s article about the creation of REGID: “A $1.6 million federal economic stimulus grant is helping
Cincinnati Children’s Hospital Medical Center launch the Registry for
Eosinophilic Gastrointestinal Disorders (REGID), an information resource that
will serve as a valuable research tool for scientists nationwide, and
ultimately, around the globe.” Per the REGID website: “The Registry for Eosinophilic Gastrointestinal Disorders
(REGID) is funded by the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK), which is a part of the National Institutes of Health
(NIH) and the U.S. Department of Health and Human Services, and by the
generous donations of families and individuals like you. REGID is a
not-for-profit collaboration of medical centers, professionals, families, and
individuals dedicated to improving 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. For more
details about the purpose and development of REGID, review the article
entitled ‘National Registry to Track Eosinophilic Disorders’.” “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 studies are designed to expand our knowledge of eosinophilic gastrointestinal disorders and the outcomes
of different treatments. To this end, researchers test specific hypotheses
and therapies. The REGID
studies section is currently under development. Content about
the purpose, funding, methods, and results of ongoing and completed REGID
studies will be added as the information becomes available.” Discover about Eosinophilic Disorders: http://regid.org/discover http://regid.org/find/publications http://regid.org/learn/clinical-trial |
Non-Profit Organizations:
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Please click to view:
APFED (American
Partnership for Eosinophilic Disorders) is a non-profit organization that is committed to
educating the public and the medical community about Eosinophilic Disorders (EoE, EGID, HES & Churg-Strauss Syndrome), creating awareness, promoting
advocacy, as well as raising money for research. It was founded in 2001 by parents
of children with EoE & EGID. They have
several leaders in the field on their medical advisory board. There is
a lot of helpful information about Eosinophilic Gastrointestinal Disease on
their site, including in their new E-Learning Center and new
interactive pages for kids. If you or
your child has been diagnosed with EoE or EGID, you
may want to consider becoming a member of APFED. Membership will provide you with access to
the current and previous quarterly newsletters, which contain very helpful,
informative articles, many written by some of the leading Drs involved in
treating EoE/EGID.
You can also access the APFED message board and you will receive
notification of clinical trials, research, legislation and other news of
interest. As per
their website: “APFED
provides accurate, up-to-date information on eosinophilic
disorders and related problems. Our goals are to increase awareness, educate patients
and physicians, increase funding for research and provide support for the eosinophilic community.” Goals: Some of APFED’s accomplishments
include:
·
American
Academy of Allergy, Asthma and Immunology Lay Organizations Committee, ·
American College of Allergy, Asthma and Immunology Lay Organizations Committee, ·
AAAAI Eosinophilic Gastrointestinal Disorders Task Force. ·
They are also an invited participant in the National
Institute of Health’s (NIH) Food Allergy Clinical Guideline Coordinating
Committee.
They are also working on:
These are only some of the things
that the extremely committed APFED volunteers are involved with. If it weren’t for their tireless efforts,
the information available to us would be minimal and the number of medical
professionals who know anything about EoE or EGID
would be very few. Thanks to their
hard work and persistence, it is now better known and understood. Donations
to APFED support
all of the above. Funding for research
is dependent upon education and awareness.
Each is equally important.
However, if contributors prefer that 100% of their donations go only
to research, they can donate specifically to the Hope
On the Horizon Research Fund. All
money specifically donated to the "Hope Research Fund" (a.k.a.
“Hope on the Horizon”) goes to research. This
has been, and continues to be, an available option on their donations
page. Research grant applications are
expert-reviewed for merit (blinded peer-review process) and recipients must
submit a budget detailing that funds are used solely to support research, not
administrative costs associated with the research site. A list of the past grant recipients and the
research that the money has helped fund is found on their site: http://apfed.org/drupal/drupal/past_grant_recipients If you
are interested in doing a fundraiser for APFED, please contact them for more
details: http://apfed.org |
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(Campaign
Urging Research for Eosinophilic Disease) is a non-profit organization
whose hope it is “to raise substantial funding to aid in research and public
awareness for this complex disease”. CURED was
formed in 2005 as by the parents of a child with an Eosinophilic
Gastrointestinal Disorder. As of
February, 2010, they had successfully raised and donated over $2,000,000 for research into eosinophilic
disorders, which is an amazing testament to their dedication as well as that
of the members of the eosinophilic community who
hold the fundraisers. As of
mid-2011, over $1,750,000 has been donated to research being done at
Cincinnati Children’s Hospital, and great strides have been made in
understanding EoE/EGID as a result. They have said they are willing to donate
to other hospitals if the money is going solely to research, per their
bylaws. Click here to view a YouTube video by Dr Rothenberg of
Cincinnati and CURED. They have
also made generous donations to research at Denver Children's Hospital
($119,250 in 2008 toward research into use of the "String Probe"), as well as University of Illinois Chicago
Hospital ($119,250 in 2008) and Northwestern University Feinberg School of
Medicine ($60,000 in 2009). As per
CURED’s founder: “Each time we make
a donation the CURED board collects
research on the different hospitals. A
vote is taken and that’s where the money is donated. The money must go directly to research and
not used for a clinic.” “…even though we have donated to Cincinnati Hospital
in the past and may in the future, CURED by laws says we donate 100% of funds
raised to research.” http://www.curedfoundation.org/ |
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(Formerly POFAK – Parents of Food Allergic Kids) – Although
they do have a free associate membership, this
site requires paid membership to
access much of the info, but it is worth it.
Among other things, they have a plethora of great recipes using
alternative ingredients, avoiding common allergens, etc. They have a message board with
lots of different forums to choose from, including specific forums for those
dealing with eosinophilic disorders. They list product recalls that might affect
the allergy community, and so on. They serve the ENTIRE allergy community,
which includes those with Eosinophilic Esophagitis and other EGIDs. From
their website:
Donations to Kids With Food Allergies can be made via their website. If you are interested in doing a fundraiser
for Kids With Food Allergies, please contact them for details. http://www.kidswithfoodallergies.org/ |
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FAAN (Food Allergy and Anaphylaxis Network) Per their website, FAAN’s
mission is:
“To
raise public awareness, to provide advocacy and education, and to advance
research on behalf of all those affected by food allergies and anaphylaxis.” Awareness
FAAN works to build public awareness of food
allergy through the media and through education, advocacy, and research
efforts. Education
FAAN staff conducts seminars and training
sessions on food allergy and anaphylaxis for patients, school staff,
government officials, health professionals, restaurant and industry leaders,
and other policymakers. Advocacy
FAAN works with policymakers on federal,
state, and local initiatives in areas such as food
labeling, epinephrine availability, and management of food allergies in
schools, camps, airlines, and restaurants. Research
FAAN supports and participates in research
studies that lead us to a better understanding of, and a cure for, food
allergy and anaphylaxis, and that improves the quality of life of individuals
managing these conditions.
please contact them for details. |
Eosinophilic Support Groups:
Online, US-based and international support groups are now
listed on our |
Various
other helpful organizations:
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Formula Coverage
Assistance: Children’s Magic (Milk allergy and gastrointestinal coalition) Children’s
Milk Allergy and GastroIntestinal Coalition (MAGIC)
is committed
to promoting healthcare coverage and reimbursement of elemental formulas for
children who are unable to consume a natural,life-sustaining
diet due to
various allergies or diseases. http://www.childrensmagic.org/ Ross (EleCare) review of formula coverage
SHS/Nutricia Neocate Patient
Assistance SHS/Nutricia Sample Physician Letter for Coverage and
Information |
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Medication
Assistance: Partnership
for Prescription Assistance |
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Organizations Granting Wishes to Children: |
Miscellaneous
helpful links:
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Something
for the kids: “Gus” (the esophagus) and “Phil” (the eosinophil) http://www.apfed.org/drupal/drupal/for_kids We also want to list a link to a book, written by a beautiful girl from
NJ who has Eosinophilic Gastroenteritis.
It is entitled: "Can You Imagine
Life Without Food?" It is from her
perspective, and explains in simple terms what it is like to live with the
disease and eat through a tube (NG tube and G-Tube). Her mother is a member of this group, and
runs the NJ/PA Yahoo Group Message Board. |
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Applied Medical Technology (AMT) Manufacturer of the AMT clamp, which is helpful in minimizing
disconnections while getting an enteral feeding. These can be purchased
through DME suppliers, but they can also be ordered directly from the
company. Contact information is on
their site. This company also
manufactures mic-key buttons, etc. http://www.appliedmedical.net/amtclamp.htm |
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If you
haven’t already seen these blenders in use at your local Whole Foods Market
or anywhere that sells freshly made smoothies, using one may be a good option
for picky eaters during food trials, or just as a good way to get nutrients
into the kids (and adults) who are on a limited diet. You can use fresh, raw fruits and vegetables in a Vitamix
blender to make a smoothie, and it will be SMOOTH (no chunks). You can make “ice cream” or sorbet with
safe ingredients, and even hot soups with these blenders. They are pricy, but since they can handle fresh, raw fruits and
veggies, ice, nuts (if safe for you), and so on without any problem (and have
a 7 yr warranty), it may be a very worthwhile purchase for some people who
are having trouble with solid foods or avoid eating certain foods due to
sensory issues. You can efficiently
hide many veggies in smoothies, and they can be quite tasty. You may be surprised to hear your kids
asking for more!
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Food Links:
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APFED has a wonderful cookbook to help with our special dietary needs: “Extreme
Cooking for Exceptional Diets”, It is available via the APFED website.
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This
site requires paid membership to access much of their info, but it is worth
it. Among other things, they have a plethora of great recipes using
alternative ingredients, avoiding common allergens, etc. http://www.kidswithfoodallergies.org/
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The
following companies make foods or mixes with minimal allergens,
&/or
sell them online. They may be ok for
some people with EE/EGID,
but
not for everyone. It all depends on what
ingredients are safe for you.
So
check the labels carefully to determine if they are right for your
individual needs.
Their products are found in some stores and online:
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Cherrybrook Kitchen – This company makes gluten-free cake, cookie and brownie
mixes. They have mixes with glutens
and without, so if you buy them, make sure you are getting the right
one. Some stores only sell the mix
with gluten, while other stores sell both.
The cakes and cupcakes come out very soft and moist. http://www.cherrybrookkitchen.com/ |
“Coconut
Secret” Coconut Aminos (Soy Sauce alternative)
Manufactured by Leslie’s Organics, this soy sauce alternative is soy-free,
Gluten-free, dairy-free, vegan, 65% less sodium than soy sauce, and made from
organic coconut sap and sea salt. It
tastes amazingly like soy sauce! So
far, we have only found this at Whole Foods for approximately $6.99/bottle
and online. http://coconutsecret.com/aminos2.html |
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Daiya (cheese alternative) –
Pronounced “Day-Ya” These cheeses are free of
dairy, lactose, casein, gluten and even soy!
The manufacturer uses pea protein instead of soy. Currently available in shredded cheddar and
mozzarella flavors. They are rather
tasty and THEY ACTUALLY MELT!!!
Ingredient list is available at the manufacturer’s website. They are currently available at Whole Foods
and Wegman’s, but it’s likely that they will be
available in other stores in the near future. http://daiyafoods.com/products/index.html |
Ian’s
Natural Foods: They sell frozen packaged foods
such as French toast sticks, fish sticks, chicken nuggets, popcorn hotdogs, kids meals, and “Alphatots” that
are free of wheat, gluten, egg, dairy, soy, and nuts. If you buy these, just make sure you look
carefully to make sure you’re getting the right one, as they sell some with
their original recipe and some that are free of those food allergens already
mentioned. We have found these at
several local stores. |
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Bob’s
Red Mill – they
have several alternative flours, as well as some mixes. Read the labels carefully to make sure they
are safe for you. You can use an egg replacer in lieu of eggs. We’ve found these products in most grocery
stores, in the natural or organic food aisles. |
Ener-G – This company makes many
alternative flours, etc. We’ve found
them in several stores, in the natural or organic food aisles. They make an egg-replacer, which comes in handy if it’s safe
for you. Check the ingredients
carefully to make sure the products are safe for you. |
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Enjoy
Life Foods – Enjoy
Life has several allergy-friendly products (i.e. gluten-free, egg-free,
soy-free, dairy-free, & nut-free), including “Boom Choco Boom” Chocolate Bars!!! Be sure to check out their chocolate chips,
to see if they might be safe for you or child! Many of the grocery store chains are now carrying their
products. There are also printable coupons located on their site. |
Vance’s
Foods –
Manufacturer of “DariFree” potato-based milk
substitute. You can purchase this
product in plain or chocolate flavor (some people find that the chocolate is
rather tasty). It is available online,
directly from Vance’s as well as other online locations (i.e. Allergy Grocer) |
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Gluten-Free Pantry – A division of Glutino. Gluten-free products (baking mixes,
etc). Substitutions can be made for
eggs and milk, etc., which are called for in their recipes. |
Namaste
Foods (cake mixes,
muffin mixes, etc). We have found
these at Whole Foods. |
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The
Allergy Grocer – This site has many different products which are allergy
friendly, gluten-free, etc. including Miss Robens
brand mixes. You can shop for products
based upon your particular allergies/food triggers. They list the ingredients in the products
they sell, as well as any potential cross-contamination issues (i.e. shared
lines), so you can read what is listed on the label before you buy. They also give different suggestions for
substituting ingredients in recipes. |
Whole
Foods Markets – a chain
of stores that sell specialty foods for various diets. They have a lot of options and may be
helpful to those trying to avoid certain ingredients. They have stores throughout the country. |
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Rice Milks: Rice Dream
is back to being gluten-free but keep reading the labels in case things
change again. Be careful as some rice
milks may contain barley malt (a gluten), which could be a problem for some
people. |
Dairy Free cheeses: See the link to “Daiya”
above for a new cheese alternative! Be careful of soy or rice cheeses. We’ve only found a couple of soy and rice
cheeses that are truly dairy free. “Vegan Slices” (which do come in
different flavors) are one brand that do not have
any dairy, whereas Veggie Slices do contain dairy. There are some other soy/tofu cheese
substitutes that do not contain dairy, and do melt. |
Please
let us know if you find a product line that has been helpful for you,
or
that you find is especially good. These are only suggestions of things to look
into;
everyone
has to base what they buy on their individual needs.