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Welcome to the NJ/PA Eosinophilic Support Group |
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Eosinophils
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What is EE?
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What is EGID?
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Advocacy
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Resources
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Links
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Articles
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Fundraisers
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Meetings
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News
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Contact Us
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Helpful Links:
(Organizations are at the top, formula/medication assistance links are
in the middle,
and food help is at the bottom)
We are a CHOP (Children’s Hospital of Philadelphia) sponsored
support group, but anyone dealing with Eosinophilic Esophagitis or other
Eosinophilic Gastrointestinal Disease is welcome to attend our support group
meetings. Within our group, most are
treated at CHOP which, thankfully, is close in proximity and
has set up a Center for Pediatric Eosinophilic Disorders where they offer
a team approach to treating the disorders, with GI, Allergy, and
Nutrition. There are also GI Drs (for
adults) who are taking an interest in EE patients at CHOP’s sister hospital,
the University of Pennsylvania Hospital.
There is also
an EE article authored by a former U of P GI (Dr David Katzka) that is listed
in the articles section. Adult GI’s who
truly understand EE/EGID and can properly diagnose and treat it are seemingly
hard to find at this point in time, but hopefully that will change in the near future.
CHOP
generously
donates a place for our group to have our meetings and even schedules the
speakers who take time out of their personal lives to meet with us, educate us,
and try to help us. We are very
thankful to them for everything that they do to try to make things easier for
us. They also have an existing research
fund for Eosinophilic Disorders.
Information about how to
donate
to the fund is listed on our Fundraisers
page.
Children's
Hospital of Philadelphia's Center for Pediatric Eosinophilic Disorders.
267-426-7003 - The Clinic Coordinator is Michele Shuker.
Clinic
Welcome Page
http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/home.html
About
Eosinophilic Disorders
Resources,
including lists to help you identify ingredients to avoid while on corn-free,
dairy-free, egg-free,
soy-free,
&/or wheat-free diets, etc.
http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/resources-for-families.html
Info to
prepare you for a visit to the clinic
http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/about-your-visit.html
Information
about publications
http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/publications.html
Cincinnati
http://www.cincinnatichildrens.org/svc/prog/eosinophilic/patients.htm
http://www.cincinnatichildrens.org/svc/prog/eosinophilic/faq/
http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/research/summary.htm
http://www.cincinnatichildrens.org/about/patient/coping/default.htm
(“How
to Cope With Your Child’s Illness”. Good
suggestions!)
Watch the APFED “Just a Glimpse”
Video: http://apfed.org/video2/video1.htm
“Hope. Heal. Cure.” awareness video: http://apfed.org/video/video1.htm
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 (EE, EGID & HES), creating awareness, promoting
advocacy, as well as raising money for research. The founders are parents of children with EE
& EGID. They have several leaders in
the field on their medical advisory board, including 2 CHOP Drs.
There is a lot of great information about Eosinophilic Disease on their
site. If you or your child has been
diagnosed with EE or EGID, you may want to consider becoming a member of
APFED. We highly recommend you check it
out if you would like to learn more about the disease or what they do. If anyone would like to donate to a charity
that does a lot for the eosinophilic community, this is also a very worthwhile
one.
They organize an annual patient education conference on Eosinophilic
Disorders in different locations every summer, which feature seminars given by
foremost specialists in the field. These
conferences also give patients and their families a chance to meet others who
are dealing with the disorders. The
conferences are very informative and well-attended.
They successfully lobbied for the creation of diagnostic codes (ICD-9 coding) specifically
for eosinophilic
esophagitis, eosinophilic gastroenteritis, and eosinophilic colitis. These codes will go into effect on
APFED is working on
standardizing diagnostic criteria, which would help patients be properly
diagnosed sooner. They have
successfully helped to educate and raise awareness within the 2ndary care
community (GI & Allergy), but are hoping to begin to focus on helping to
educate the primary care community as well.
This may result in earlier diagnoses, thus decreasing the amount of time
people have to suffer with insufficiently treated symptoms.
In addition, they are lobbying for mandated formula coverage
nationwide. They also initiated House
Resolution 296, which was passed on
They also support physician medical education, develop educational
materials for physicians, patients and support groups, maintain a support phone
line, assist people with finding a physician or a local support group if
needed, and have a message board on their website for member support.
These are only some
of the things they do; they are extremely committed volunteers. If it weren’t for the tireless efforts
of the volunteers at APFED, the information available to us would be minimal
and the number of medical professionals that knew anything about EE or EGID
would be very few. Thanks to their hard
work, it is now becoming better known and understood.
Donations
to APFED support all of the above.
However, if contributors prefer that 100% of their donations go only to
research, they
can
specify that when donating (All money donated to the "Hope Research
Fund" 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 and recipients
must submit a
budget
detailing that funds are used solely to support research, not administrative
costs associated with the research site.
Here
is APFED's PDF regarding how the donations are used:
http://www.apfed.org/downloads/How%20will%20my%20donation%20help%20APFED.pdf
We recommend reading APFED’s
Eosinophilic Disorders Fact Sheet (2 pages), which can be found at: http://www.apfed.org/downloads/Fact_Sheet_Oct.2007_Eosinophilic%20Disorders.pdf
.
APFED also has a wonderful new cookbook
to help with our
special dietary needs.
Some of our own group members contributed recipes!
It’s called “Extreme
Cooking for Exceptional Diets”, and it is available via the APFED website.
http://www.curedfoundation.org/
CURED (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 has donated over $1,000,000 in under 5
years to Cincinnati Children’s Hospital, for research, and great strides have
been made in understanding EE/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). In 2008 & 2009, they have also donated to
research at Denver Children's Hospital (research into use of the "String
Probe"), as well as University of Illinois Chicago Hospital and
Northwestern University. When asked
whether the person doing a CURED fundraiser can specify which hospital that the
money is donated to, CURED’s founder advised that “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.” Their board votes on where they
want the money to go, you can’t specify which hospital it will go to. You would have to contact CURED to discuss
any further details.
On-line support groups:
Members of
our NJ/PA group can go post messages 24/7 by signing up as a member of the following
Yahoo Group. It is also owned/run by one
of our NJ/PA members.
http://health.groups.yahoo.com/group/NJPAEosinophilicSupport/
There is
also another online group that many belong to, which has members
worldwide. It is a Yahoo Group called
Eosinophilgastro, which is for parents of children
with EE & EGID. It can be found at:
http://health.groups.yahoo.com/group/eosinophilgastro/
The Eosinophilgastro-Adult forum can
be found at:
http://health.groups.yahoo.com/group/Eosinophilgastro-Adult/
NY Residents have a local
support group, Protect
Allergic Kids, which is available for those
with EE/EGID as well as other food allergies.
It can be found at:
http://www.protectallergickids.com/index.html
Kids
With Food Allergies (Formerly POFAK – Parents of Food Allergic Kids) – This site requires
paid membership to access much of their info, but it may be worth it as (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. They
list product recalls that might affect the allergy community, and so on.
http://www.kidswithfoodallergies.org/
APFED also has a message board on
their site.
Something for the kids:
We also want
to list a link to a book, written by a beautiful little 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.
Formula
Coverage Assistance:
Children’s
Magic
(Milk allergy and gastrointestinal coalition)
http://www.childrensmagic.org/
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.
Ross (EleCare) review of formula coverage
http://www.ross.com/reimbursement/default.asp
http://www.ross.com/reimbursement/statedetail.asp?StateID=1
Ross Patient assistance Program
http://www.needymeds.com/papforms/rosmed0407.pdf
http://www.rxhope.com/papinfo/company/pdf/RossMetabolic.pdf
SHS/Nutricia Neocate Patient Assistance
http://www.neocate.com/aaa_neocate/0,534,112,97,236,0,0-179-77.ashx
SHS/Nutricia Sample Physician Letter for Coverage and
Information
http://www.shsna.com/pages/neocate_junior_ins_letter.htm
Medication Assistance:
HelpingPatients.org - Patient Assistance
Non-Profit Organizations:
FAAN- Food Allergy and Anaphylaxis
Network - http://www.foodallergy.org/
Kids With Food Allergies - http://www.kidswithfoodallergies.org/
Oley
Foundation - http://www.oley.org/
Applied
Medical Technology (AMT) –
manufactures 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
The following companies
make foods or mixes with minimal allergens, &/or sell them via online
stores. 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. They are found in some stores and online:
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. Debbie’s
family loves the Gluten Free chocolate cake mix – it comes out very soft and
moist.
http://www.cherrybrookkitchen.com/
Coconut Aminos
(Soy Sauce replacement) – The name brand is Coconut Secret, and it’s
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 and online.
http://coconutsecret.com/aminos2.html
Daiya (cheese alternative) – These
cheeses are free of dairy, lactose, casein, gluten and even soy! The manufacturer uses use 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 sought after and available in
other stores in the near future. In case
you’re wondering, it’s pronounced “Day ya”.
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.
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. Debbie’s family really
enjoys the Gluten-free brownie mix, and has served it at the kids schools. A teacher asked for the recipe, and no one
had any idea they were “different”. We
used Ener-G 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.
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 your child! So far, we’ve found
their products at Whole Foods, ShopRite, Genuardi’s and Wegman’s. According to the list on their site, many of
the grocery store chains are now carrying their products. There are also printable coupons located on
their site.
Good Karma
Foods - Good Karma Foods produces organic rice milks and Rice Divine
“ice cream”. Their chocolate rice milk
is very tasty, but is difficult to find as Whole Foods has just
discontinued it. They still carry the
Rice Divine, though.
http://www.goodkarmafoods.com/
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)
The
Allergy Grocer – This site has many different products which are allergy
friendly, gluten-free, etc. You can
search for foods 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.
Gluten-Free
Pantry –
Gluten-free products (baking mixes, etc).
Substitutions can be made for eggs and milk, etc., which are called for in
their recipes.
http://www.glutenfreepantry.com/index.php?option=com_content&task=view&id=53&Itemid=62
Namaste
Foods (cake
mixes, muffin mixes, etc). We have found
these at Whole Foods.
https://www.namastefoods.com/shopping/storefront/cgi-bin/news.cgi?Category=Home
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, including in our area. They also carry their own line of foods (365
Brand), and some of their products might be appropriate for some of us.
Rice Milks: Rice Dream
is back to being gluten free but keep reading the labels in case things change
again. 365 Brand Rice Milk is free of
glutens. WestSoy Rice Milk is
another. Be careful of some brands, as
they 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 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. We haven’t found any
rice cheeses that are truly dairy-free, so if you do find one, please let us
know.
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.