All posts by Mary Jo Strobel

National Eosinophil Awareness Week

Announcements

May 17th – 23rd, 2015

Thanks to APFED’s efforts, on May 15, 2007, the House of Representatives passed HB 296, forever designating the third week of May as National Eosinophil Awareness Week (NEAW).

The purpose of NEAW is to create awareness and educate both the general public and medical community about eosinophil-associated diseases. The theme of NEAW is E-D-U-C-A-T-E:

NEAW_sma_22014

Across the nation, patients, caregivers, health care professionals, friends and family members are preparing for National Eosinophil Awareness Week (NEAW), May 17th – 23rd, 2015. Join us as we step up efforts during NEAW to teach others about eosinophil-associated diseases, an emerging healthcare problem worldwide, and how lives are affected by these diseases.

Ways to Get Involved

  • Share our fact sheet and “Can you say ‘Eosinophilic’ flyer, with friends, family, health care providers, and businesses in your community.
  • Share facts about eosinophil-associated diseases on your social media pages.
  • Change your social media profile image to a NEAW ribbon (see bottom of this page for graphics you may download).
  • Share your story by sending a letter or email to family and friends. A sample letter is provided.
  • Ask media outlets to run a story about eosinophil-associated diseases. A sample letter to the editor is provided.
  • Share our Public Service Announcements with local radio and tv stations.
  • Encourage family and friends to watch our awareness week and our “Eosinophilic Gastrointestinal Diseases” videos.
  • Pass out DumDum pops along with our “PDum Dums are a Food Group” flyer or “A Treat is Neat” card.
  • Distribute educational materials to health care providers and area businesses.
  • Organize a fundraiser to benefit research of eosinophil-associated diseases. For help, email fundraise@apfed.org.
  • Join the National Eosinophil Awareness Week community on Facebook.

Day by Day Guide of Suggested Activities

Educate (Sunday)

Donate (Monday)

  • Make a personal donation to APFED and encourage others to match it.

Unite (Tuesday)

  • Coordinate a get-together with local eos families to celebrate NEAW, or work together to plan a fundraiser.
  • Become a member of APFED and ask a friend to join as well.
  • Register for APFED’s Annual Patient Education Conference.
  • Join or start a local support group.
  • Join the National Eosinophil Awareness Week community on Facebook.

Change (Wednesday)

  • Change the way others view your disease by sharing your story.
  • Wear a magenta colored t-shirt to school or work and encourage your friends and colleagues to so the same.
  • Change your social media profile picture and banner to the NEAW logo (see below).
  • Share APFED’s fact sheet about eosinophil-associated diseases or “Can you say ‘Eosinophilic?” flyer.

Awareness (Thursday)

  • Wear a magenta colored t-shirt to school or work and encourage your friends and colleagues to so the same.
  • Change your social media profile picture and banner to the NEAW logo provided on the APFED website.
  • Share APFED’s EADs Fact Sheet or “Can you say Eosinophilic?” flyer.

Thank (Friday)

  • Reach out to those who have been supportive of your journey with eos to thank them.
  • Thank health care providers for their support and care.
  • Thank legislators who support issues important to our community.

Engage (Saturday)

  • Invite family, friends, and others to experience dietary limitations (Suggestion: Eat Like Us for a Day Challenge).
  • Create a community fundraising walk at your school or workplace, or organize a Hope on the Horizon Walk to benefit APFED’s research fund.

Additional Resources of Interest

Digital Images to Share and Post (websites, social media profiles, newsletters, etc.):

ribbon-edu-apfedribbon-edu

ribbon-neaw-apfedribbon-neaw

ribbon-eos-apfedribbon-eos

Banners:

ribbon-banners-neaw websiteribbon-banners-neaw-dates2 website

APFED would like to thank the following organizations, support groups
and physicians for their partnership during NEAW 2015

AusEE
AAAAI
Anaphylaxis Canada
Alabama Eosinophilic Disorders Support Group
Central Virginia Eos Support Group
Cincinnati Center for Eosinophilic Disorders
Cincinnati Eosinophilic Family Coalition
Cincinnati Children’s Hospital Medical Center and the Cincinnati Center for Eosinophilic Disorders
Dr. Amy Darter, Oklahoma Institute of Allergy and Asthma
Feeding Tube Awareness Foundation
FreeFromForKids
FAACT – Food Allergy and Anaphylaxis Connection Team
FARE Food Allergy Research and Education
Kids with Food Allergies Foundation
Parentsown
UFAN Division of Eosinophilic Support (DOES)

Special thanks to our Education Partner for supporting APFED’s celebration of the 8th Annual National Eosinophil Awareness Week!
neocate

Life notes: Parents advocating for children makes a difference

In the News, What's New

Dawn McCoy never dreamed she’d be using the professional skills she honed as an education advocate to secure appropriate resources for her child. In recent years, however, the Chesterfield County resident has done what she thinks most mothers would do, if necessary: become an expert in her son’s rare chronic illness, help establish a support group, and organize a conference to raise awareness.

McCoy has used the fear, uncertainty and frustration that often come with raising a special-needs child as fuel to create a life of acceptance and reasonable contentment for herself,
her son and others who are living with the realities of eosinophilic esophagitis.

Eosinophilic esophagitis (pronounced EE-Oh-SIN-Oh-Phil-ic esophagitis) is a chronic immune system disease that leads to inflammation of the esophagus. It is often caused by foods and allergens. Many who live with the condition have problems swallowing solid food or beverages, and many, like McCoy’s son, Joshua Cole, receive their meals in pureed form. Joshua also
suffers from eczema and asthma.

“You don’t know what’s happening,” McCoy recalled about the period when Joshua first became ill, about 10 months old.

McCoy’s persistent research and questioning of doctors led to a definitive diagnosis when Joshua was about 18 months old.

“This is a rare condition, and 1 in 2,000 people have this and don’t know,” said McCoy, a resource development consultant with the Virginia PTA who also serves as a leadership development consultant and speaker.

Joshua is 3 and requires special care daily. Visits to the ER, constant access to an EpiPen and vigilant monitoring of his environment and ingredients in all food he consumes are the norm.

Rather than surrender to helplessness, McCoy decided to be proactive.

She eventually met another mother whose son suffers from eosinophilic esophagitis, and together they started a support group for youths, adults and parents of young children with the condition. The 60 members of the Central Virginia Eosinophilic Support Group hail from metro Richmond, Charlottesville, Fredericksburg and the Hampton Roads area.

“We have compared coping strategies, (tips) on where to shop and notes on medical treatment and support,” McCoy said. “I can’t tell you how encouraging it is to hear each other’s stories.”

To best meet Joshua’s needs, McCoy found herself connecting with professionals and families across the nation and around the globe, which led to the idea of hosting a one-day conference in Richmond.

“There’s a national conference every year, an extraordinary gathering of the top doctors, allergists, neurologists and immunologists,” she said. “Most of us cannot afford to go because treatment for our kids is so expensive.”

McCoy has solicited support from local businesses and health care organizations to fund an event that will help patients, caregivers and families learn more about the disorder and how to cope. The daylong conference will be held at the Children’s Hospital of Richmond at VCU on Nov. 8 and costs just $10.

McCoy learned this month that she is a nominee for the Children’s Hospital 2014 Spirit of Advocacy Award. Winners will be announced Oct. 29.

“It’s humbling, because I feel like I’m just doing what I need to do for my child and to help raise awareness for other families, because there’s a need,” she said. As a parent, “you have to have the courage to speak up, ask questions and ask for help and resources.”

Stacy Hawkins Adams is the mom of a son and daughter ages 13 and 16. She is also a Chesterfield County-based novelist, communications professional and volunteer child advocate. Contact her at Stacy@StacyHawkinsAdams.com.

– Stacy Hawkins Adams (source: richmond.com)

New NIH-funded Research Network Focuses on Eosinophilic Gastrointestinal Diseases

Press Releases, What's New

Patient advocacy group offers full support

Atlanta, GA. (October 8, 2014) – The American Partnership for Eosinophilic Disorders (APFED), a patient advocacy group based out of Atlanta, is pleased to announce its support of new federally funded research that will focus on eosinophilic gastrointestinal diseases (EGIDs).

Eosinophilic-associated diseases are chronic inflammatory disorders characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues, organs, and/or blood stream, which causes inflammation and damage. When inflammation is in the esophagus, the condition is known as eosinophilic esophagitis. When it is in the stomach, the condition is called eosinophilic gastritis. When it is in the colon, it is known as eosinophilic colitis.

The 5-year, $6.25 million grant, made possible through awards by the National Institutes of Health to expand the Rare Diseases Clinical Research Network, will allow for the formation of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) to research eosinophilic and allergic disorders and to train investigators in how to conduct clinical research. CEGIR will focus on research projects involving patients with eosinophilic esophagitis, gastritis, and colitis. The involvement of patients from the beginning is crucial to the success of the Consortium, therefore a unique, key component of the grant includes CEGIR’s collaboration with patient advocacy groups to ensure the needs of the patients are recognized and met.

The American Partnership for Eosinophilic Disorders (APFED), the world’s largest not-for-profit patient advocacy group dedicated to education, advocacy, awareness, and research for eosinophil-associated diseases, is working closely with CEGIR to address the clinical problems of most importance to patients and their families. APFED has committed to full participation in CEGIR, including financial support.

To further strengthen support for research and advocacy efforts pertaining to eosinophil-associated diseases, APFED led efforts to organize the Coalition of Eosinophil Patient Advocacy Groups (C-Eos, www.c-eos.org), which was established in May, 2014.

Marc Rothenberg, MD, PhD, director of the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s will serve as principal investigator of the NIH grant, and Glenn T. Furuta, MD, director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and professor of pediatrics at the University of Colorado School of Medicine, will act as administrative director and site investigator. Investigators from additional sites will also participate in CEGIR including Bern University Switzerland, Children’s Hospital of Philadelphia, Lurie Children’s Hospital, the National Institutes of Health, Northwestern University, Rady Children’s Hospital, Riley Children’s Hospital, Tufts University, and the University of North Carolina.

By working together collaboratively, these sites have access to a comprehensive database of more than 8,000 patients.

“These are painful, lifelong diseases that make it difficult or impossible for individuals to eat many or all foods,” says Rothenberg. “Individuals with these diseases often have to fuel their bodies by drinking costly formulas. We will collaborate with researchers, patients and patient advocacy groups to better understand, treat and educate about these diseases.”

“CEGIR presents an outstanding opportunity for experts from across the world to perform collaborative clinical research and to train a new generation of investigators,” Furuta said. “Research will be guided by patient advocacy groups and results from these studies will bring transformative changes to the care of patients with EGIDs.”

“We applaud the NIH for recognizing the need for improved diagnostics and therapeutic treatments for patients with eosinophil-associated diseases and for allocating critical resources to this Consortium,” said APFED President Dr. Wendy Book. “APFED has long advocated for research of these diseases and it is a dream come true to have the nation’s most esteemed investigators come together to partner on efforts in tandem with patient advocacy groups. We are honored to collaborate with the researchers and NIH institutes on this landmark project and we embrace the opportunity to work with other patient advocacy groups and with CEGIR to bring about a greater understanding of these diseases and the patients who develop them.”

Learn more: NIH funds research consortia to study more than 200 rare diseases

Enroll in the CEGIR Contact Registry

About American Partnership for Eosinophilic Disorders (APFED)
American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org

Zach fights back – living with Eosinophilic Esophagitis

In the News, What's New

BOYNTON BEACH, Fla. – Zach Blair is among the most competitive 11 year olds on the baseball field, and on the basketball court, which is incredible because he has a disease so rare you would struggle to pronounce it.

Eosinophilic Esophagitis is a digestive disease caused by a toxic white blood cell, and most foods can cause severe pain and damage to Zach’s esophagus.

Zach gets his energy from formula, which is his primary food source.

“There’s not enough research and there’s not enough knowledge,” says Zach’s mother Susan, “they just know that currently there’s no cure.”

Zach says he gets tired of drinking the formula, and that it’s hard when he sees his friends are eating all of the foods he used to like. He puts all his problems behind him by playing his favorite sports, from basketball to soccer to baseball.

“I feel he does an amazing job just trying to change his attitude, says Susan, “keeping himself busy and find himself something he likes to pursue.”

Zach is one of the stars of his Boca Raton little league team , making friends along the way, and being an 11 year old boy.

“Mostly what I love about sports is that it helps me get over my disease, ” says Zach, “it’s really frustrating because I want to know how to cure this disease.”

– John Evenson (source CBS 12)

In My Shoes: Courageous ill child is inspiring

In the News

No one expects a healthy child to develop an incurable disease. I know I didn’t.

Like any first-time mother, I was excited when Joshua first started eating solid food. He readily downed diced carrots, peas, bananas and potatoes.

But when he reached 10 months, mealtime became mayhem. He resisted, gagged on and vomited basic foods. Reading baby books calmed my nervousness. It was just a little spit up, right?

But the gagging worsened. I painfully watched him lose the ability to swallow even a teaspoon of pureed food. Eating became dreaded and painful for Joshua, my husband and me. We held our breath when he swallowed, praying the food would stay down. He needed the nutrients. What else could we do?

Joshua also developed problems with breathing and became allergic to grass, pollen and trees. He apparently inherited my asthma gene. Round-the-clock nebulizer treatments seemed excessive and did not really help his wheezing.

When I returned to the workforce after his first birthday, I felt an inner struggle. I worried about whether a caregiver would be as sensitive as I was to his wheezing and flare-ups.

At the onset of symptoms, I grabbed Joshua’s emergency room bag and a carryout dinner for the all-expense-paid trip to the emergency room. This, not the career fast lane, became normal.

Another family gene, eczema, also took over his innocent body. Perpetual scratching led to pulling his hair out.

Lathering him with ointments and oils only modestly helped improve his dry skin. Doctors prescribed steroid creams that helped slightly. But how would steroid medication affect his growth?

We saw these ailments, and doctors treated them, as separate complaints. By this point, Joshua tolerated only a handful of “safe” foods and continued to fall behind his age group on weight gain.

I literally became Dr. Google, moonlighting on medical websites and trying to find answers about his overlapping conditions.

My sleuthing paid off when I stumbled across a disease that included allergies, eczema and vomiting. Since the most pressing condition was Joshua’s inability to swallow, I sought out a gastroenterologist.

Within days, he performed a biopsy and diagnosed Joshua with eosinophilic esophagitis. Known as EOE, this disease cripples the immune system. Infection-fighting white blood cells called eosinophils attack the body and the esophagus. Having EOE means that Joshua is allergic to most food. This results in swelling and irritation throughout his gastrointestinal tract.

Other manifestations include the eczema and allergies. Researchers do not know what causes EOE. While it does not appear to be genetic, some predetermining factors are asthma and allergies.

Joshua started a liquid amino acid-based formula, Neocate, considered a standard nutrient for those diagnosed with EOE. In more severe cases, doctors recommend feeding-tube therapy. Joshua is still under evaluation for a feeding tube.

I was relieved to know that Joshua’s condition had a name. At the same time, I was overwhelmed that he had a disease with no boundaries or cure.

In addition to the daily unexpected symptoms of EOE, what concerns me is that children elsewhere may suffer from these ailments and not know it.

Joshua is now 2, and his courage inspires me. Despite his three-page résumé of medical terminology, reactions, medications and hospitalizations, and more than a dozen caregivers, he powers through it.

And that for me is food for thought.

Dawn McCoy of Chesterfield County is a writer and consultant.

– Dawn McCoy (source richmond.com)