TUCSON, AZ (Tucson News Now) –
Imagine never knowing the taste of pizza or a hamburger. A growing number of kids are experiencing a rare disease that causes them to get sick if they eat most foods, and conditions in Arizona may be causing more cases.

It’s called Eosinophilic Esophagitis, or EE. Two-year-old Patrick Howe of Tucson has the disease makes you allergic to just about every food.

“Crumbling over in pain, screaming bloody murder, vomiting,” describes his mother, Erin Howe. She says Patrick’s already allergic to several foods, but she’s still learning which foods makes him sick.

“He has a hard time eating anyways so we’re not sure if there are a lot more things that he’s allergic to or that cause inflammation.”

It’s a disease that affects more than one in two thousand people with cases increasing up to tenfold in the past ten years. Doctors are now diagnosing EE at a higher rate especially in Arizona where our environmental allergens can affect someone’s sensitivity to certain foods.

“Those cross-react with food allergens and cause the disease,” says Dr. Fayez Ghishan, chairman of UA Pediatrics.

The thing that makes EE unique is the number of trigger foods and delayed reaction to those foods. Eating the wrong thing can make a child very sick and send to them hospital, so they can only eat amino acids, a food element.

“That doesn’t taste very well so you either have to put the tube in the nose or in the stomach,” says Ghishan.

Patrick gets by on pricey mail order formula and special ten dollar box drinks. He’ll never know what normal food tastes like.

Experts say cases where kids will have to be fed through a feeding tube are rare. The disorder can generally be treated through topical steroids.

– Carissa Planalp (source: Tuscon News Now)

GREENVILLE, SC (FOX Carolina) –
Four foods – that’s all one Greenville boy can eat. If he veers off his strict diet, he gets painfully sick.

“When you eat some bad food, it hurts your belly,” said 6-year-old Giles Martin Schanen.

For Giles, almost every food is a bad food. He is living with a rare disease called Eosiniphilac Esophagitis.

Dr. Jonathan Markowitz, with Children’s Hospital of the Greenville Hospital System, diagnosed EE in Giles.

“When you eat foods you’re allergic to, it causes this allergic reaction to the esophagus, which then leads to numerous symptoms which can be anywhere from abdominal pain to symptoms with acid reflux to a feeling of stuff coming up your throat, vomiting,” said Markowitz.

Not long after Giles was born, it was obvious that something was wrong.

His mother, Christine Schanen, said, “For three years, he lived with chronic abdominal pain, horrible diarrhea, reflux until we were referred to a gastroenterologist for a work up.”

Then, Elaborate allergy testing revealed, only seven foods were safe to eat.

Three years later, Giles had a setback.

Christine Schanen says, “Unfortunately, the most recent allergy testing showed, that of those seven foods, at least three, and possibly four, he had developed new allergies, if you want to call it, new sensitivities to those foods.”

So, for right now, Giles can eat milk, wheat, beef and pork. His parents are also trying out broccoli, cauliflower and cooked pears since those three foods didn’t cause an allergic reaction during the latest testing.

To keep those three new foods, he will go through his seventh endoscopy in April to make sure his esophagus isn’t inflamed or closing up.

Having to go through so many medical tests is tough on Giles, and it’s very difficult for his parents.

“It’s so stressful to watch your child suffer and not have any clue about what’s wrong. So, I hope that somebody watching this might see this and hopefully maybe find an answer about what’s bothering their child,” said Christine Schanen.

There is no known cure for EE, and right now there is no FDA approved treatment for this obscure disease that affects 50 people out of every 100,000.

Markowitz added, “There’s much less incentive for any drug company to develop a treatment for it because compared to other diseases that affect more people, it’s much more likely that those drugs are going to be used.”

Through all the pain, the allergy testing and endoscopies, Giles continues to focus on the positive things in his life. For example, he just built a 2,000-piece Lego tower, and he’s a big fan now of NASCAR Nationwide series driver Jeremy Clements of Spartanburg since he’s racing to raise awareness about the disease.

Giles told us all about Clements’ race car.

“It looks like an EE cure car, but it’s a race car. ‘Is it a certain color?’ It’s a certain color, green. ‘How fast does it go?’ Well, zoom!” he said.

Feb. 29 is actually Rare Disease Day around the world. The goal is to focus attention on improving research, diagnosis and available treatments.

If you’d like to learn more about eating disorders like EE, you’ll find links in the As Seen On section of foxcarolina.com.

– Trent Butler (source: Fox Carolina)

GREENVILLE COUNTY, S.C. —Giles Martin Schanen, 6, from Greenville County has been diagnosed with a chronic disease that has no cure. Because of it, he can only eat seven foods.

“Milk, wheat, soy, green beans, peas, pork and beef. That is all he can eat,” said Giles Martin’s mother, Christine Schanen.

Giles Martin Schanen was diagnosed with eosinophilic esophagitis when he was 3 after eating most foods caused him pain.

Doctors discovered the disease in 1995.

“There is no known direct trigger for the disease. In the vast majority of the cases, it is a food allergy-driven disease,” said Dr. Jonathan Markowitz of Greenville Hospital System’s Children’s Hospital.

Markowitz said the disease impacts people of all ages and there is no cure. Markowitz said each person with the disease reacts differently to different foods.

“We don’t usually consider it life-threatening and our expectation is that somebody who has this disease is going to have the same lifespan of anybody else. It’s really a disease that affects the quality of life,” Markowitz said.

The disease can make meal-time in the Schanen home challenging.

“We have to make a separate meal for Giles Martin. He tends to eat before the rest of us eat just to avoid having to be tempted or look at what we’re having and really be envious of wanting to eat it,” Christine Schanen said.

Local NASCAR driver Jeremy Clements will host an event on Saturday to create awareness and raise money for eosinophilic gastrointestinal disorders. A Valentines and Vegas fundraiser will be held at Embassy Suites Golf Course and Convention Center in Greenville from 7 p.m. to 11 p.m. For tickets, go to www.racingforacause.com.

– Staff (source: WYFF4)

When all the dust settles, you may have a 10-year-old boy from McDonough, Georgia to thank for getting you relief for a chronic digestive problem. The boy is Ricky Springer and he has had digestive problems since he was less than two years old.

His mother, Julie, took him from doctor to doctor — 18 in all — before they got a handle on the problem: something in his diet was triggering his body to make cells called eosinophils to inappropriately cause inflammation and pain in his digestive tract.

In Ricky’s case, a lot of trial and error has uncovered that the “bad guys” –the triggers — are corn, eggs and tomatoes. But for someone else it could be different and it could be very subtle.

For example, Ricky’s brother, Rusty Jr., has trouble with milk if it comes from a different dairy. Some people have trouble not with wheat but with bleached wheat.

So how is Ricky helping you or your child? When he was three years old, Ricky put a sticker on his dirt track go-cart. It was for the American Partnership for Eosinophilic Disorders (www.APFED.org), a nonprofit organization that supports people with eosinophilic digestive problems.

People started noticing the sticker and Ricky asked them to contribute to the cause. He also educated them about the often-overlooked health problem. Soon other kids wanted to display the stickers and talk up the topic, then older kids, and then even NASCAR drivers including #51, Jeremy Clements.

This led to forming “Racing for a Cause,” an awareness and fundraising campaign to support APFED.

Since the campaign began in 2009, more than five million people have been educated about eosinophil-associated disorders through events and media. In 2010, Ricky established the Racing for a Cause Team, with 12 racers and two race teams representing three countries, helping to further create awareness of these diseases.

Ricky’s mother says the message is simple: something in your food or the way it was processed could be sparking your own body’s cells to react and cause pain, discomfort and even permanent scarring of your gastrointestinal tract. And your doctor may overlook it.

That’s why Ricky is pushing so hard for awareness and delighted others have joined in.

On Feb. 11,, 2012 there’s a big “Racing for a Cause” event featuring Ricky and his NASCAR buddy, Jeremy Clements, in Greenville, South Carolina. A major pediatric hospital there, Greenville Hospital System University Medical Center, is a sponsor.

And a specialist there is excited about helping other doctors get “in the know.” Learn more, and see a video with Ricky, at this link: http://www.racingforacause.com/

There are no quick fixes yet but research is progressing. In the meantime, some people keep food diaries and eliminate foods one by one to see if that brings relief.

Others rely on hypoallergenic medical foods. Some day there may be genetic tests that pinpoint what’s likely to negatively affect your digestion.

We have a long way to go. But first it starts with awareness and fundraising and, in this case, it has started with a boy and a go-cart. You never know where the trigger for medical progress will come from.

– Andrew Schorr (source: EmpowHER)