All posts by Mary Jo Strobel

Life-threatening food allergies increasing in children

BOSTON —It’s lunchtime for 8-year-old Cameron Ledin.

On the menu today, and everyday, is a specially designed formula he takes in through a feeding tube. Hypoallergenic and made of amino-acids, it’s just bare-bones nutrition and all his body can take.

Each bag of formula has 400 calories in all, and he’s fed one bag four times a day.

“He was having issues with abdominal pain. He was getting full early. He wasn’t gaining weight well,” said Dr. John Lee, an allergist at Children’s Hospital Boston.

“People in our school weigh 50 or 51 pounds, and I’m like the only one who weighs 40 pounds,” said Cameron.

Last summer, Children’s Hospital Boston finally put a name to what Cameron’s endured since he was a baby: Eosinophilic esophagitis, or EoE. It’s a disease where his white blood cells attack food, damaging his esophagus.

“It’s almost like his body’s decided food’s a parasite and starts building up and closing off the throat,” said Kim Ledin, Cameron’s mother.

The disease is rare, but alarmingly, is on the rise.

“In the last 10 years or so, there’s actually been probably a seven- to 10-fold increase in the prevalence of EoE,” said Lee.

Doctors aren’t sure why. One of the most popular theories is the hygiene hypothesis.

“Our society is so clean that we have no bacteria. We have no infections. Our immune system doesn’t have anything to fight. So instead of fighting things that it should be fighting, it’s fighting food,” Dr. Perdita Permaul, who specializes in children’s food allergies at Massachusetts General Hospital’s Food Allergy Center.

“They’ve done studies looking at farm kids that grew up in Europe. They live on the farm. They’re exposed to dirt. They’re exposed to farm animals. They have little to no food allergies,” Permaul said.

In the United States, Cameron’s one of a growing number of American children with food allergies. One in 12 kids under age 6 have allergies, and at Children’s Hospital Boston, emergency room visits for allergic reactions more than doubled from 2001 to 2006, according to the Journal of Allergy and Clinical Immunology.

“Food allergies, asthma, all types of allergic disorders are increasing,” said Lee.

For Cameron, that’s meant pain and frequent hospital trips.

“Day after day after day nausea, vomiting, not tolerating food, not wanting to eat food,” said Todd Ledin, Cameron’s father.

“Joint pain, headaches, rashes,” said Kim Ledin.

And at school, kids can be cruel.

“My meatloaf sub, they thought looked like a brain,” said Cameron. “(It tasted good), but it stopped me from eating it because it really hurt my feelings.”

There’s no cure for EoE. But since he’s been on formula, Cameron’s put on three pounds in three weeks.

“My son’s had no pain for the first three weeks in his entire life, and that’s pretty awesome,” said Kim Ledin.

The next step is slowly reintroducing foods back into Cameron’s diet, one at a time, now that his esophagus is in better shape.

“Banana chips, potatoes, sweet potatoes, a lot of stuff,” said Cameron.

The Ledin’s advice for other parents is simple.

“Sometimes it’s not just allergies. It might be something if there are (gastrointestinal) problems. Push your doctor into taking the next step,” said Todd Ledin.

Source: WCVB.com

Recipient Announced for the 2015 Hope APFED/ARTrust™ Pilot Grant Award

Funded study to examine genetic variations in the development of eosinophilic esophagitis

ATLANTA, GA—A 2015 Hope APFED/ARTrust™ Pilot Grant Award has been given to a promising research study that will focus on the mechanisms behind the development of eosinophilic esophagitis (EoE) and investigate the age-related differences between EoE in children and adults.

Patients with EoE have above-normal numbers of eosinophils (a type of white blood cell) in the lining of the esophagus (the tube connecting the mouth to the stomach), leading to inflammation and damage. There is no cure for EoE, and there are no FDA-approved treatments.

At the annual meeting of the American Academy of Allergy, Asthma & Immunology held Feb. 19-24 in Houston, TX, Antonella Cianferoni, MD, PhD, of Children’s Hospital of Philadelphia and the University of Pennsylvania, was announced as the recipient of a two-year $140,000 grant for her project titled “Genotype Phenotype Correlation in Eosinophilic Esophagitis,” to be funded equally between APFED and ARTrust™.

Dr. Cianferoni’s research will help us better understand genetic variations in the development of EoE, and the important role that thymic stromal lymphopoietin (TSLP), a protein that promotes allergic inflammation, plays in the process. Her research could potentially lead to a better understanding of the relationship between TSLP and two other regulator proteins (EMSY and CAPN14).

“This award will allow me to focus my research on understanding which role genetic variations play in each individual patient, potentially making it easier in the future to predict the best therapy to use in a single patient based on his/her own genetic makeup,” said Dr. Cianferoni. “This grant will also make it possible to gather more preliminary data to apply for a NIH grant and continue future research.”

Dr. Cianferoni was also the recipient of an APFED HOPE Grant for up-and-coming researchers in 2009. Her work to help us better understand how EoE develops speaks to both her talent as a clinician-investigator and the relevance of her proposed studies to the mission of APFED, ARTrust™, and the Hope Grant program.

Established in 2013, the Hope APFED/ARTrust™ Pilot Grant Award is the result of a collaborative effort between APFED and the Allergy, Asthma & Immunology Education and Research Organization, Inc. (ARTrust™) to enable investigators from a variety of disciplines to initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new and inventive ideas that are likely to lead to future external funding and better patient outcomes.

“Supporting research efforts is one of the pillars of APFED’s mission,” said APFED Executive Director Mary Jo Strobel. “This pilot grant study is the type of project that will help us to better understand the relationship that specific proteins have with one another when eosinophilic esophagitis is present and how these proteins may affect the disease process. We are thrilled that our partnership with ARTrust™ continues to advance research and make progress toward a cure.”

“The AAAAI, through the ARTrust, has prioritized the funding of young investigators through a variety of mechanisms including its interactions and support of patient advocacy groups such as the American Partnership for Eosinophilic Disorders. The AAAAI applauds Dr. Cianferoni for her continued outstanding research efforts and is proud to help contribute to her future success in defining the pathophysiology and potential treatment for complex disorders involving eosinophils,” said AAAAI President Robert F. Lemanske, Jr., MD, FAAAAI.

APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations and has contributed more than $1.6 million for the research of eosinophil-associated diseases since the fund began in 2005.

About American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose 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

About Allergy, Asthma & Immunology Education and Research Organization (ARTrust™)

The ARTrust™, an independent foundation associated with the American Academy of Allergy Asthma and Immunology, helps sustain and advance the future of allergy, asthma and immunology by supporting education and research initiatives to improve patient care. www.aaaai.org/global/ARTrust.aspx..

2015 Hope Pilot Grant Award Recipient Announced

Funded study to offer molecular insights into eosinophilic esophagitis

ATLANTA, GA—A 2015 Hope Pilot Grant Award will fund a promising research study that may create new opportunities in eosinophilic esophagitis (EoE) research by focusing on the molecular aspects of the condition.

Patients with EoE have above-normal numbers of eosinophils (a type of white blood cell) in the lining of the esophagus (the tube connecting the mouth to the stomach), leading to inflammation and damage. There is no cure for EoE, and there are no FDA-approved treatments.

Ting Wen, PhD, of Cincinnati Children’s Hospital Medical Center, will receive $100,000 of funding over a two-year period for his project titled, “Defining Esophageal Lymphocyte Phenotype and Function in Eosinophilic Esophagitis.”

Dr. Wen’s research will look at tissue-residing intraepithelial lymphocytes (IELs), which are cells that operate as a first line of immunological defense in the mucosal barrier in the human gastrointestinal system. This research will test the hypothesis that the presence of T helper type 2 (Th2) cytokine–producing IELs drives eosinophil tissue homing at the cellular level. The study may also suggest whether adaptive immune recognition by IELs may be a common mechanism in eosinophil-associated diseases.

“We look forward to Dr. Wen’s contribution to the research of eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “By examining the cellular and molecular mechanisms that underlie EoE, we hope to gain a deeper understanding and open the door to new ways of treating this disease.”

APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations and has contributed more than $1.6 million for the research of eosinophil-associated diseases since the fund began in 2005. HOPE Pilot awards allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases, with a focus on the development of new ideas that are likely to lead to future external funding.

National Eosinophil Awareness Week

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

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)