#apfed

[reinventedrust]

Some might wonder what someone on a gluten free dairy free diet might eat. Well, how about bbq chicken, cooked carrots, and not-buttered buttered potatoes. Herbed with just a touch of bacon drippings for extra pizazz. Life doesn't have to be boring food wise even with major diet restrictions! #yum #yummy #gf #glutenfree #celiac #eosinophilicesophagitis #eoe #dinner #dairyfree #foodallergies #foodporn #apfed #lifeisgood #family

[eosinophil-hate-blog]

This week is National Eosinophil Awareness Week!

[reinventedrust]

Find of the week. Certified GF meatballs. Dairy free too. Added to some good pasta and its yum time. #glutenfree #gf #wheatfree #celiac #celiacdisease #eoe #eosinophilicesophagitis #dairyfree #yum #yummy #dinner #pasta #foodallergies #apfed #inspire

[reinventedrust]

Best batch yet! Homemade breakfast sausage, yum! #yummy #family #kids #gf #glutenfree #dairyfree #homemade #homecooking #home #yum #sausage #breakfast #eosinophilicesophagitis #eoe #foodallergies #apfed #inspire

[thebestoftimes]

This Halloween, FARE is encouraging communities to start a new tradition that will help make this holiday season less scary for children with food allergies: the Teal Pumpkin Project. This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available. 

The Teal Pumpkin Project is designed to promote safety, inclusion and respect of individuals managing food allergies – and to keep Halloween a fun, positive experience for all.

Download FARE's Non-Food Treats Halloween Poster to show Support

Download A Flyer About The Teal Pumpkin Project to share it and spread the word

Ideas for Non-food Treats  

Available at dollar stores, party supply stores, or online shops, these low-cost items can be purchased and handed out to all trick-or-treaters, or made available in a separate bowl from candy if you choose to hand out both options. Nearly all of these items can be found in a Halloween theme or festive colors.

Glow sticks, bracelets, or necklaces

Pencils, pens, crayons or markers

Bubbles

Halloween erasers or pencil toppers

Mini Slinkies

Whistles, kazoos, or noisemakers

Bouncy balls

Finger puppets or novelty toys

Coins

Spider rings

Vampire fangs

Mini notepads

Playing cards

Bookmarks

Stickers

Stencils

What do I do if I want to participate?  Participating is simple – paint a pumpkin teal, pick up some inexpensive toys (ideas can be found on our blog) and download FARE’s sign to show that you have non-food treats to hand out. It’s a simple gesture that can have a big impact. You can also download FARE’s promotional flyer to circulate in your local community so that your neighbors can participate too!

Why teal?  Teal is the color of food allergy awareness.

Are you taking away the traditional aspect of collecting candy on Halloween?  Our goal is simply to ensure that all kids with food allergies are able to enjoy Halloween, an event for the entire community. Trick-or-treaters typically receive pounds of candies and chocolates, and we’re sure they will continue to collect plenty of candy this year. Many kids, whether they have food allergies or not, enjoy the experience of receiving little toys and other fun items that they can keep.

Do kids with life-threatening food allergies actually trick-or-treat?  Yes! Who wouldn’t want to participate in such a fun tradition shared with friends, classmates and family? Many kids with food allergies go out to trick-or-treat just like their friends, but they have come to understand that most of their fun will come from dressing up in a costume. They know they’ll give much of their candy away because it’s not safe for them. We hope the Teal Pumpkin Project becomes a tradition for years to come so that kids will know that when they knock on someone’s door that has a teal pumpkin, they’ll have a treat they can fully enjoy.

Are there any non-food treats that I should avoid?  There are a few considerations when choosing which non-food items to hand out. First, some non-food items still contain allergens, such as Play-Doh, which contains wheat. Additionally, try to choose latex-free items, as there are children who also have latex allergies.

Can I still pass out candy?  Sure – just do it safely! The point of the Teal Pumpkin Project is to make trick-or-treating as inclusive as possible. You can keep the experience safe by keeping your food treats and non-food treats in separate bowls, and by asking trick-or-treaters if they have any food allergies or giving them a choice of which treat they’d like: candy, or a non-food item.

Do kids really like non-food treats?  They don’t just like them, they love them! Finding a unique treat at your house will be a fun surprise. Glow bracelets, for example, are a great option – they are inexpensive, kids can wear them throughout the night, and parents are appreciative because they help make kids more visible after nightfall. Other non-food items, such as pencils and stickers, can be used at home and at school long after candy has run out or expired.

How do I get my neighbors involved?  Print out some of FARE’s flyers and put them in your neighbors’ mailboxes. If you have a neighborhood email listserv, you can send out an email about the initiative, including a link to FARE’s website. You can also reach out to your local library, dentist/doctor offices, schools, or community buildings to see if they would be willing to help you post signs or get the word out. Share information on social media, and post a picture of your teal pumpkins when you have them near your door! Don’t forget to use the hashtag #TealPumpkinProject when you post!

[adventuresofasickgirl-blog]

150 days till APFED conference 2013 Philly!

I am so beyond excited for this conference. I will get to meet all of my friends from online and a lot of the parents who have younger kids with eosinophilic disease. That is the one thing we all have in common, eosinophilic disease, we come from all over the country, all different ages, all different back rounds but our disease brings us together. its a conference with all different activities, seminars and team building with doctors and counselors that are trained to help us, a walk to raise money towards funding for research for a CURE, everyone stays in one hotel and just spends time together, its amazing, my doctors who have treated me for this at children's hospital of philadelphia will be speaking on their research and about the disease. so excited!

[apfed-blog]

APFED is pleased to present the EleCare Webinar Series “Answers from Experts” which will feature short interviews with experts regarding topics important to the Eosinophilic Community. APFED, in conjunction with the Center for Managing Chronic Disease at the University of Michigan, is developing the EleCare Webinar Series to provide accessible education about eosinophil associated diseases. The first Webinar in this series pertains to School Advocacy and obtaining a 504 and/or IEP. "How do I inform my child’s school and what information do they need to know?" answered by Jennifer Cardenas, The Right to Learn, Trained Advocate from the Parent Leadership Support Program.

http://www.youtube.com/playlist?list=PL184787CB3CDFCE91&feature=plcp

[mommytoelodie]

EOS Walk

Yesterday we had a chance to see some of our great friends and participate in a walk to fund research for Eosinophilic Esophagitis (EoE). Irene, pictured with Elodie above, was diagnosed with EoE about a year ago.

I didn't know what EoE was until I found out Irene had it. In fact, I think the majority of people have NO idea what EoE is. Though I know that I have a limited understanding, I hope to create awareness about Eosinophilic Esophagitis.

Eosinophilic Esophagitis: (Definition from APFED.org) 

"Eosinophils, a type of white blood cell, are an important part of the immune system, helping us fight off certain types of infections, such as parasites. They are named because of the characteristic microscopic stain that gives them a reddish color under the microscope. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections (caused by parasites), eosinophil associated gastrointestinal disorders, leukemia, and other problems. When eosinophils occur in higher than normal numbers in the body, without a known cause, an eosinophilic disorder may be present. Sometimes, eosinophils can be found in tissues in addition to the blood circulation which is seen in certain types of disease states. Typically, eosinophils make up less than 5% of circulating white blood cells in health individuals and can vary over time in healthy individuals."

Imagine if your child vomited every time they ate. Imagine a life of tummy aches, blood streaked vomit, choking, tears and misdiagnoses. 

A diagnosis of EoE is not good news, but for families searching for an answer to their child's suffering, it can provide some relief. A diagnosis means that they can begin the path towards healing and treatment. 10 years ago, there was no website, no conference, and no community for families dealing with EoE. That's why APFED was founded, and the annual conference provides an opportunity for the community to gather, bond, and to learn more about Eosinophilic Disorders. 

Since most children, like Irene, who have EoE cannot eat many or all foods, they depend on an amino acid based formula, or a feeding tube, for their nutrition. While I am sure every family is so thankful for this life-saving nutrition, it is also incredibly expensive. Irene's family pays $50 A DAY for Irene's food, Neocate. (And no, insurance does not cover it.) Treatment is usually diet restriction or steroids- but of course the hope is that through research, a cure will be found.

The world is not designed for people with severe food allergies or EoE. Any play space, birthday party or even classroom could be dangerous for children with these conditions, unless there are precautions taken for their safety.

That's why awareness and understanding is so important for these families. 

I was really excited that the APFED (American Partnership for Eosinophilic Disorders) conference came to San Diego this year. This meant some visiting time with our friends but also a chance to support them by participating in the EOS Walk, which raised $16,000 to benefit APFED’s HOPE on the Horizon Research Fund. 

EOS Walk Participants

My family with Kristyn (Irene's Mom) and Irene

Me getting some snuggle time with Irene

It was amazing to participate in the EOS walk. There is something very beautiful about the shared understanding between these families. In particular, I loved the group of teenage girls who proudly sported bikinis on the walk, showing off their feeding tubes. Later on the walk, a little boy who also had a feeding tube, took off his shirt, too, because his mom said that he thought the girls were "awesome".

After the walk, there was a party in celebrating APFED's 10 year anniversary. The dance floor was the place to be and Irene and many other children showed off their wide variety of dance moves. There was also an enthusiastic litte boy with a head full of bouncy golden curls bobbing to the music- even with his Mom holding his feeding tube backpack.

Though I can never fully understand what it is like to suffer from EoE or what it's like to have a child with EoE, I can continue to learn about it and to spread the word!

If you didn't know what EoE was before you read this post, would you consider sharing it with a friend?

Learn more about EoE at APFED.org or read another article about a child with EoE.