LIVING

With EoE, Allergies, Asthma and a G-Tube

National Eosinophil Disease Awareness Week

Lucky Charms? Eggs and toast? Bagels and cream cheese?

What did your kid have for breakfast?

Mine had a sucker and a bag of elemental formula.

Tinleigh diagnosed December 2012. Feeding tube placed January 2014.

Tinleigh diagnosed December 2012. Feeding tube placed January 2014.

It’s awareness week and that’s just we’re going to do, bring awareness! The boys are all geared up and ready to spread the word.

Charlie diagnosed June 2010. Gage diagnosed April 2010. Feeding tube placed December 2012.

Charlie diagnosed June 2010. Gage diagnosed January 2010. Feeding tube placed December 2012.

Actually they’re pretending to be the Wild Kratt brothers.

 

I pulled these facts from APFED

Eosinophil-associated Diseases
FACT SHEET
A group of uncommon chronic illnesses, eosinophil (E-o-‘si-n-o-“fil)- associated diseases, are rapidly emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go undiagnosed for years due to a lack of information or awareness of these diseases.

What is an Eosinophil?
A type of white blood cell associated with allergies, parasites, and cancers.

What are Eosinophil-associated Diseases?
– High numbers of eosinophils accumulate in body tissues causing inflammation and damage
– Classified by body tissue where eosinophils accumulate
– Diagnosed and monitored by tissue biopsies
– Chronic diseases requiring long term treatment, with no known cure
– Debilitating diseases leading to missed work, school, social outings
– Delays in diagnosis are common

Eosinophilic Esophagitis (EoE)
– Causes inflammation and damage to the esophagus, affecting the ability to eat
– Estimated prevalence of roughly 1 in 1,800
– Increasing in prevalence over the past 10 years
– Patients may depend on steroids or medical nutrition therapy, sometimes through a feeding
tube

Eosinophilic Colitis (EC)
– Causes inflammation and damage to the large intestine (colon)
– May be misdiagnosed as Irritable Bowel Syndrome (IBS) or Inflammatory bowel disease
– Patients may require restricted diet therapy, elemental formula or chronic steroids

Eosinophilic Gastroenteritis (EGE), and Eosinophilic Gastritis (EG)
– Causes inflammation and damage to the stomach and/or small intestine, often misdiagnosed
– Estimated prevalence of EGE and EC combined is 1 per 3500
– Causes severe abdominal pain, forceful vomiting and/or diarrhea
– Treatment may involve a limited diet, feeding tube and/ or steroids

Hypereosinophilic Syndrome (HES)
– Diagnosed by very high numbers of eosinophils in the blood and tissue
– Causes potentially fatal damage to one or more organs in the body (heart, lungs, gut, skin)

Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss Syndrome)
– Eosinophils cause damage to small to medium blood vessels (vasculitis)
– Patient may initially be diagnosed with severe asthma
– Causes potentially fatal lung, heart, brain or gastrointestinal damage
– Estimated prevalence is approximately 5 cases per million people per year, with a rate in
asthmatics of as high as 80 cases per million per year.

Eosinophilic Fasciitis
– Eosinophils build up in the connective tissues that surround muscles, nerves, and blood vessels.
– Arms and legs are primarily affected. Symptoms often include pain, swelling, and thickened and pitted skin that resembles an orange peel.
– While symptoms typically resolve on their own, some cases require corticosteroids and immunesuppressing medications. In many cases, EF resolves in a few years, however, some people have reported symptoms for longer than 5 years, or have reported symptoms resolved and then returned later.

Eosinophilic Cystitis
– Eosinophils cause injury and inflammation to the bladder.
– Reported to be more common in males, and may affect both adults and children.
– Symptoms may include painful urination, blood in urine, and pain in the lower abdomen.

About APFED
-501(c)3 non-profit patient advocacy organization for those living with eosinophil-associated
diseases
– 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.
– Raises funds for research of eosinophil-associated diseases through competitive peer-reviewed
grant program.

These are three beautiful  faces of EoE. They shouldn’t have to suffer. Help us find a cure.

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May 18, 2014 - Posted by | LIVING

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