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Welcome to the NJ/PA
Eosinophilic Support Group |
Home
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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)
Watch the APFED “Just a Glimpse”
Video: http://apfed.org/video
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), 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.
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,
this is a very worthwhile one.
They
organize an annual Conference on Eosinophilic Disorders in different locations
every summer. They are also seeking
support of Congress for the creation of diagnostic codes (ICD-9 coding) specifically
for eosinophilic esophagitis,
eosinophilic gastroenteritis, and eosinophilic colitis, so if we could write to
our congressmen, it would be very helpful.
They are working on standardizing diagnostic criteria, which would help patients be
diagnosed sooner.
In
addition, they are lobbying for mandated formula coverage nationwide. They also initiated House Resolution 296,
which was just passed on
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. They have
done more for people with EE & EGID than they could possibly imagine, and
we thank them from the bottom of our hearts.
We recommend reading APFED’s Eosinophilic Disorders Fact Sheet
(2 pages). It can be found at: http://www.apfed.org/downloads/Fact_Sheet_Oct.2007_Eosinophilic%20Disorders.pdf
.
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”. The funds raised by CURED are donated to
Cincinnati Children’s Hospital, for research.
They said they are willing to donate to other hospitals if the money is
going solely to research (per their bylaws), but it hasn’t gone to any other
hospitals yet (as of early 2007). 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 the details.
We have been advised by CURED’s founder 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.”
While
we would love to see all hospitals become more involved in treatment of
eosinophilic disorders, the following pediatric hospitals (see links below) are
two of only a handful in the country that are specializing in the disorder with
a team approach involving more than one specialty. Others on this coast are Boston Children’s
and Mt Sinai in NY. Thankfully, there
are now specialists at several hospitals in the country that are taking an
interest in the disorders and are treating them, and more are starting to open
their own clinics for Eosinophilic Disorders as well.
Within
our support group, many go to CHOP (Children’s Hospital of
Philadelphia) 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. Others within the group are also successfully
treated at Robert Wood Johnson in NJ, DuPont in Delaware, Mt Sinai in NY (which
now also has an EE clinic), or travel to Cincinnati Children’s
Hospital for treatment. We
also know of an adult
CHOP generously donates a place for our
group to meet every two months 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 a 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
Clinic Welcome Page - http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83824
About Eosinophilic Disorders -
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83825
Information about publications -
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83839
Allergy Dept's EE Information Page -
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=77065
Cincinnati Children's
Hospital's info on EE.
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
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 (gluten-free cake 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/
Ian’s Natural Foods: They sell packaged foods
such as “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.
Namaste Foods (cake mixes, muffin mixes, etc).
We have found these at Whole Foods.
Debbie’s family enjoys the Sugar Free muffin mix, which we add our safe
chocolate chips to and top with coarse Turbinado Sugar. The vanilla cake mix has a unique
flavor.
https://www.namastefoods.com/shopping/storefront/cgi-bin/news.cgi?Category=Home
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). 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 and Wegman’s, but
according to the list on their site, many of the grocery store chains are now
carrying their products.
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
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.
Whey-Out Chocolates – a new company started by a woman in GA, who wanted to
make allergy-friendly candies. They even
have chocolate bunnies for Easter! t may
be worthwhile to check out the ingredients and see if they are safe for
you.
http://www.wheyoutchocolate.com/index.htm
Rice Milks: 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: 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.